Please can you lovely people assist with interpreting my personal symptoms and test results below?
Test results below (highly summarised to give a view of changes over time, as I have a lot of test results over the last few months).
N.B. I have not been feeling well for years, however the 30/08/19 is my first ever thyroid test containing TSH, FT4 and FT3. Previous tests have only been TSH (of course, thanks NHS), and the historical TSH results between 2014 and 2017 have always been between 1.3 and 2.36).
N.B.2. I have not yet had Thyroid Antibodies tested; I had blood drawn this week for the full MediChecks Thyroid Check UltraVit rT3 (as I fully understand the need to assess both types of T Ab's, rT3, and associated vitamins and full iron profile etc.
Vit D nmol/L (lab range "below 50 indicates deficiency"): 52 on 19/07/2017, 66 of 25/01/19 (I have supplemented Vitamin D3 all winter @ 2000 IU daily). Currently awaiting latest test results from Medichecks.
B12 ng/L (Serum B12, total) (lab range "<120 indicates deficiency"): 279 before B12 replacement therapy started in December 2018, and now >1500 ever since (no surprise there!). Currently awaiting latest test results from Medichecks.
Folate nmol/L (lab range "under 3 indicates deficiency"): 10.4 before Folate supplementation (started in January 2019), now always >23.4 while supplementing. Currently awaiting latest test results from Medichecks.
Ferritin ug/L (lab range 24-336): 90 on 13/12/18, 55 on 05/01/19, 44 on 04/02/19 (and Ferrous Fumarate (equivalent 200 mg Iron daily) prescribed once I hit 44). Currently awaiting latest test results from Medichecks, however NHS test on 04/03/19 showed Ferritin back up to 80 (still on the low side?) after 2 months on high dose Iron, and now my GP has stopped my prescription (I have a supply of non-prescription Ferrous Fumarate 210 mg (69 g iron) from an online pharmacy however, but am not currently taking it).
I have tried to keep the above as brief as possible... many other results available if anyone wants to know, as I have also had some private Thriva tests and am currently awaiting Medichecks thyroid and vitamin panel.
Rheumatlogy (I paid for a private referral at the Nuffield in March 2019, due the to 6 month NHS waiting time) want my Adrenal function tested (they asked my GP to order serum Cortisol and serum ACTH to test for *secondary* adrenal insufficiency, however my GP has refused to do this, and instead just re-referred me back to Rheumatology "for them to do it" in 6 months from now; hence, taking things into my own hands somewhat, I am currently awaiting the results of a Genova Diagnostics 4-point salaviary Cortisol, DHEA and SecIgA test.
I strongly suspect an associated thyroid disfunction also as I am concerned that my FT4 is near the bottom of the "normal" range, and definately well outside of the optimal range (as is my FT3), but am awaiting the full MediChecks results for T AB's, rT3 etc.
I fully intend to obtain a private Endocrinology consultation, once I have my full results.
Male, 33 y/o, previously morbidly obese @ 142 kg / 185 cm (BMI 42), have always struggled with my weight since early teens. Managed to intentionally lose 47 kg over 8 months, with oversight from NHS GP, between March 2018 and October 2018 using exercise, calorie restricted diet (high protein) and Orlistat (horrible "medication"). It was very, very hard, but I managed to get down to 95 kg (BMI c. 27) by October, the lightest I'd been since age 14. I rediscovered my teenage love of cycling in June 2018 (when I got below 120 kg), and slowly and comfortably increased my exercise level and intensity (and adapted my diet accordingly), and was road and off-road cycling up to 300 miles a week by October 2018. My mental health hasn't been good for a few years, depression mainly (prescribed several SSRIs, various taking therapies etc. over 6 years to little effect) and then most recently diagnosed bipolar type 2 (historical depressive episodes only, but one "drug induced manic episode" (bad reaction to a prescribed SNRI which didn't agree with me, hence it became a bipolar diagnosis... which is now under review and expected to be removed from my record shortly; more on that below) in mid 2017 following several "stress breakdowns".
Since starting a proper exercise routine again in 2018 (building very, very slowly in the first few months, before progressing to light cycling and then moving forward from there) I was in a generally "good" (but by no means great) and happy place for the first time in years, but was still struggling with transient low energy, loss of drive, weakness, mental sluggishness. In July 2018 I developed an essential hand tremor, and then started to develop peripheral neuropathy (initially numbness and tingling in hands and feet mainly, progressing to full blown numbness (gloved feeling) by October), along with ataxia, balance issues and further worsening extreme fatigue, and eventual exercise intolerance with significant chest pain (central to left sided) in late October, both with and without exertion. This by far isn't all of my symptoms (I'll list them all further below), but this should set the tone.
Ended up hospitalised via A&E and the admitted to Cardiology on 10th November 2018. I reported feeling exhausted with chest pain, syncope, frequent pre-syncope, lightheadedness, vision losses upon change of posture etc. etc. (lots of postural hypotension symptoms). My ECG showed sinus bradycardia with a heart rate of 35 bpm (it was about 80 bpm at rest in July, which is more typical for me historically (albeit at a heavier weight), and my BP was 90/55. Very long story short, after 10 nights in for observation with many blood tests, multiple 24 hour ECG's, an outpatient 24 hour ECG in December, and an echocardiogram in January 2019 (which shows "mild symmetrical heart dilation" but otherwise all aspects seen were normal), Cardiology still can't find a cause for my extremely low heart rate. I have had mildly elevated Troponin I results (often in the 0.20-0.39 range, but never above 0.40, which would be more diagnostic for confirming heart muscle damage, i.e. myocardial infarction). I have recently obtained all of my hospital records, and have multiple ECG's with doctors comments written on them of "acute myocardial infarction" and "partial left bundle branch block (LBBB)", which is quite concerning to me...
Noone in the NHS is able to explain ongoing symptoms, in particular the persistently low heart rate, persistently low BP, persistent chest pain of varying intensity, persistent pre-syncope events, persistent fatigue and exhaustion etc.
After discharge and much research, I did manage to make some progress with my GP on the potential for Vitamin B12 deficiency in December 2018 (as I was sick of having no answers, and I approached them with this as a hypothesis), and very long story short, this evolved into a "possible" concomittant B12, Folate and Iron deficiency trifecta over the next 3 months. They have tested for autoimmine Pernicious Anaemia, which was negative (however I am aware that this assay is not very sensitive, and often reports false negatives). Therefore, GP has called it a "functional B12 deficiency", although my diet is good. I have to date received the following prescribed: 43x Hydroxycobalamin B12 injections (every 2 days, mainly due to the neuropathy, and these are still continuing but now on a weekly frequency (prescribed, self-injected)), and have been on Folic Acid 5 mg/day for 2 months, and high-dose Ferrous Fumarate (Iron, equivalent to 200 mg non-heme Iron/day). This has certainly improved my neuropathy and very largely lifted my "brain fog" and depression, however there has been little other improvement in symptoms as a result of 3+ months of this therapy.
I've also been referred to Rheumatology for assessment re. chronic fatigue; long story short after many blood tests, they can't find an auto-immune cause. They want my GP to assess my Cortisol and ACTH levels re. potential adrenal insufficiency, but that's only because my GP insists that there is nothing wrong with my thyroid... more on that later.
I have recently in March had to procure a mobility scooter for use at times as I am often so exhausted and weak, with very low BP and heart rate and all of the associated symptoms. I do try to walk when I am able, but it's not always possible. I have gone from a relatively fit and active cyclist with a fair amount of energy in October (but still "not feeling right at all"), to an often house-bound individual who is too exhausted to go out.
Yes, I'm afraid it is a VERY long story... that that was the highly summarised version!! I will provide further details upon request though.
I am still as of April suffering with the following symptoms; some of these are fairly new developments, some are long standing, and worsening with the passage of time.
I've been back through A&E no less than 12x since discharge in November, mainly due to syncope, fevers and chest pain.
My symptoms:
- Excessive tiredness
- Weight gain (7 kg re-gained since January 2019)
- Cold extremities (hands and feet most often frozen, noticed since November 2018)
- Heat and cold intolerance
- Low basal body temperature (often below 35 deg C; I have recently been asked to trend average daily values over 1 month)
- Slow movements
- Occasional pins and needles (even with B12 etc.)
- Breathlessness (under even mild exertion)
- Palpitations (sometimes at rest, more often under exertion)
- Liver tenderness and inflamation
- Anaemia (initially borderline macrocytic (large red blood cells) anaemia, and more recently some instances of low red cell count over the past couple of months, while on B12/Folate/Iron therapy)
- Lack of coordination
- Balance issues
- Dizziness and lightheadedness
- Insomnia (trouble getting to sleep, waking in the night)
- Loss of libido
- Muscle cramps and weakness
- Joint stiffness and muscle pain
- Occasional difficulty swallowing, and food sticking in my throat
- Dry mouth
- Dry eyes, pressure around my right eye, associated headaches (a recent development, since March 2019- I've seen an optician and now been referred to the eye hospital for further assessment, as no obvious issue has been found with my actual eyes as yet)
- Blurred vision (since March 2019)
- Constipation, abdominal pain
- Haemorrhoids
- Tinnitus
The list could go on... I'll stop there for now.
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tomranson85
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Orlistat blocks your body's absorption of some fat-soluble vitamins and beta carotene. Therefore, when you use orlistat you should take a daily multivitamin that contains vitamins A, D, E, K, and beta-carotene. Read the label to find a multivitamin product that contains these vitamins. Take the multivitamin once a day, 2 hours before or 2 hours after taking orlistat, or take the multivitamin at bedtime. Ask your doctor or pharmacist any questions you might have about taking a multivitamin while you are taking orlistat.
Indeed, one of my theories was that Orlistat may have contributed to low vitamin levels due to poor absorption (after all, that drug essentially gives you a chronically "very fast gut", if you catch my drift... With my GP fully aware and supporting me, she continued to prescribe it for 8 months. It was only discontinued once I was hospitalised.
I was taking a Tesco own-brand generic combined multi-vit and mineral which inc. 14 mg iron, 400 ug of folic acid, and 2.5 ug of B12 (as cyanocobalamin) between June 2017 and November 2018 (I started taking this when I was first diagnosed with bipolar). So I was supplementing throughout the time that I was using Orlistat (and for good reason, as I was already aware of the potential for vitamin malabsorbtion due to that drug). My GP said taking a MV wasn't necessary at all but basically said "knock yourself out, it won't do any harm". Frankly, I don't think it was anywhere near potent enough.
Since November 2018, when I became most acutely ill, I have routinely been taking one multi-vit and mineral or another (I have chopped and changed several times following extensive research) due to my concern of vitamin deficiencies (once B12 deficiency was identified, that was an alarm bell). For the last 3 months I have been self-supplementing using Garden of Life Vitamin Code RAW B Complex, plus Vital Nutrients Multi Mineral (no copper, no iron formulation), D3 2000 IU, High strength Omega 3 fish oil 1000 mg, and also a separate vitamin A (as beta-carotene), Vitamin C, etc. I've had most of the bases covered, however there has been no improvement, in fact a noticeable deterioration, in my health.
After being started on the B12 injections for 3 weeks, I felt fantastic for about 2 weeks, and then have been nosediving ever since. My symptoms come and go, I have good days, and bad days.
What do you make of my FT4 and FT3? I'm concerned that my FT4 is quite low (when considering "optimal" ranges), and my FT3 is also low, depending upon the "optimal" range you compare it to.
I have actually felt that secondary hypothyroidism (with central hypopituitarism, potentially affecting adrenal function) fits my symptoms and history quite well (I fully appreciate that you would usually expect TSH and FT4 to be a lot lower, however mine are both slowly drifting/trending down in that direction), however I am still awaiting my very recent private (MediChecks/Genova) 4-point salivary Cortisol and DHEA test results, as well as my full private thyroid panel inc. Thyroid AB's and rT3 results. Those, in combination, will be quite telling. I will also have up to date B12, Folate, Ferritin, full Iron panel and Vitamin D results along with those as they are also on the test panels.
A central thyroid and/or adrenal issue seems quite feasible (i.e. central hypopituitarism), also given a relatively recent change (over a month now) in the pattern of my headaches (now much more migraine-like, and right sided, with pressure around my right eye). I have seen GP about these symptoms, she basically laughed them off and said "anxiety" and said "get your eyes tested again". I did this at Vision Express, and the optometrist there was quite concerned and asked my GP to refer me to NHS Optometry (appointment 5th May), and I was so concerned that I went to another optician the next day under the Somerset ACES scheme for a second opinion, and she also was quite concerned and asked my GP to refer me to Neurology last week. However, my GP has refused to refer me to Neurology and keeps saying "anxiety". I'm at a complete loss with the NHS.
As it stands, I am awaiting the following tests/investigations.
2. NHS Rheumatology (August 2019) (re. Cortisol and ACTH testing (re. adrenal insufficiency hypothesis) as requested by private Nuffield Rheumatologist (the same Dr works at the NHS hospital (Musgrove Park, Taunton) which I've now been referred back to to see NHS Rheumatology)
3. NHS Optometry (May 2019) (re. recent change in headaches, with blurry right eye, vision changes, pressure around right eye.)
I'm now expecting to add private Endocrinology to this list...
Indeed, I'm very much waiting in anticipation of the latest (and my first full set of) full results.
No I haven't had a thyroid ultrasound. I've never been offered one, however I can see why that may be beneficial (depending upon if antibodies are obvious or not).
Yes I have been treated with Lithium Carbonate, between March 2018 and November 2018. It was prescribed as a mood stabiliser for depression, along with Lamotrigine as an adjunct for the same purpose; I was slowly titrated up to 1000 mg daily of Lithium Carbonate, and was on this dose between July and November 2018. It felt somewhat beneficial in terms of mood stability, however it was abruptly stopped when I was admitted to hospital with low heart rate, low BP and chest pain etc. as they thought the lithium had induced my Bradycarida. I have, with full agreement from my psych doctor, been fully unmedicated for bipolar/mental health since 10th November, as the Vitamin B12 therapy had a profoundly beneficial effect on my mental health and clarity of mind after several weeks of injections (it was frankly revolutionary and I finally felt like "me" after 20 years of mental suffering). My Psych says I am a very interesting case, having had such a positive response to B12 and he has now placed my bipolar diagnosis under formal review, with an expectation of it being withdrawn very soon.
My first abnormally high TSH occured while I was on Lithium therapy, August 2018 as per my published test results. The majority of my symptoms developed or severely worsened while I was on Lithium therapy, and they have not improved since discontinuation of Lithium (or lamotrigine, which was ceased at the same time). If anything I am now at my most unwell when considering all physical symptoms, however mentally I am in pretty good health (I'd be lying if I said that the ongoing physical health problems aren't getting me down a bit, but I don't feel "depressed" or have mood instability like I used to). My Psych initially panicked a bit when he say my elevated TSH, but then both my Psych and GP didn't think anything of the abnormally high TSH after checking FT4 a few days later, and I trusted them... Although I was suspicious of the effect of lithium on thyroid function. My Psych was concerned at some points last year that my continuing and worsening physical symptoms could be thyroid related, however he dismissed that diagnosis when he saw my FT4 level. And he saw I was still managing, with a lot of effort, to keep cycling and loose weight, which made him further disbelieve potential thyroid issues.
I am aware that lithium can suppress thyroid function, especially in long term use (however mine was only short term, due to the sudden discontinuation in hospital). The hospital duty Psych took my history and commented that I was not "a typical bipolar patient, and maybe I didn't need to be on lithium etc. anyway" (and I have to agree). I will read your links with great interest. I have often wondered if the combination of extreme weight loss, Orlistat nutrition/vitamin absorbtion issues and lithium could indeed be the conbined factors which may well have disturbed thyroid function. I haven't been right since.
I have no idea what my FT4 and FT3 (and RT3) looked like before starting the diet and Lithium therapy as they had never been measured. Classic NHS, "only measure TSH" - "TSH is fine" blah blah.
I was also put on the atypical antipsychotic Quetiapine for 9 months before the lithium (again for plain old depression and mood instability, no psychosis or delusions), and that gave me drug induced liver injury at prescribed therapeutic doses. Hence it was discontinued and I was switched to lithium.
Those links were extremely interesting, and I think could indeed be very relevant...
Something else I neglected to mention earlier, but now seems very relevant, was that I had a c. 4 week period between mid-January and mid-February 2019 when I temporarily felt much better... and suddenly had energy again, and was out riding my bikes again (stated out slow, but surprised myself after a month of absense (while very ill) by doing 30km one day and then 85km two days later, to no ill effect, and with no chest pain!). Also bearing in mind that I chart my heart rate several times a day and my BP usually every 1-2 days, my resting HR came back up to between 70 and 85 and my resting BP was back to c. 120/80 for those few weeks. My HR under hard exertion (chest strap monitor) was also back up to an appropriate 150-170, whereas when trying to cycle during more acute illness in December, I couldn't push it above 140 no matter what (and I felt terrible with chest pain etc.). During these few weeks I felt good, had no pain, was exercising again and enjoying life etc. I had also suddenly, and without trying, lost 5kg of weight (all fat, according to my clever body mass scales) between mid January and late January (and that was BEFORE starting out on the bikes again... So it wasn't caused by exercise).
I also had a (now very interesting) set of Thriva blood tests done on 25/01/19, which I didn't mention earlier as I have always belived them to just be an anomaly. My FT4 was unusually high at 15.6, and TSH 1.77. Whereas all of my other FT4s before and after that one (which are all from periods when I wasn't feeling well) are always in the 10-11 range. It now makes some sense to me that I may well have been experiencing an auto immune flare attack on my thyroid during those 3 to 4 weeks, hence the sudden increase in FT4, associated sudden weight loss, and a feeling of wellness and health, returned exercise ability, and an absence of chest pain (which I only ever seem to experience during phases of Bradycardia) and remission of other symptoms. Perhaps I do have undiagnosed Hashimoto's, and my bipolar "up" phases (which aren't actually manic phases atall, just rare periods of relatively good health and wellbeing (compared to the normal and predominant low phases) have indeed been caused by autoimmune flares on my thyroid.
Almost as soon as I felt well again after those brief weeks, I quite suddenly became ill again in mid-late February, with the return of Bradycardia (resting HR average 40 bpm), low BP, chest pain, exercise intolerance, general malaise, occasional syncope (20 minute blackout) and frequent pre-syncope etc. I've been back through A&E by ambulance no less than 5 times since late February after multiple collapses in public places and at home, yet with no diagnosis (and then ended up referred to rheumatology due to "chronic fatigue and pain" and they started talking about CFS/Fibromyalgia/Rheumatoid-arthritis/Lupus etc. all of which have come back negative so far based on those specific autoimmune screens. I haven't been well since and now the GP just insists it's all anxiety... And wants to do no further investigations, and just dope me up on painkillers and anti-anxiety meds.
I trend all my vitals, have a symptoms diary, and can clearly correlate the patterns of good health and poor health, but yet noone will listen or take me seriously. Anxiety, they all say (bipolar is a difficult label to shake). The NHS flat out insist that my thyroid is "fine" (based on TSH and FT4 alone). Hence I'm doing my own testing as explained. Fingers crossed for some nice high antibodies!!! Then I may finally make some diagnosis progress, fast. Else, how could I argue for a thyroid ultrasound?
I am genuinely concerned about my heart & circulatory system and the effect this may be having on it, so at least they are doing the CT angiogram in early May to check for any heart disease, furring or the arteries etc. (which may well be expected with hypothyroidism). My maternal grandfather died from heart failure after 3 suspected undiagnosed heart attacks. My father committed suicide in 1987 due to bipolar type 1, which I now pain to think could well have been a relatively simple hormonal issue, after all (I've long suspected he never got the help or diagnosis he needed, and he was a general surgeon himself (Navy, later NHS) himself). Medics seem to be generally poor at getting help for themselves. My mother died young from multiple forms of cancer, so there is certainly autoimmune risk in the family. Also my paternal uncle is type 1 diabetic, so again autoimmune risk.
Your links and explanation were a real eye opener (and I thought I had already "read the entire Internet" on this subject myself!!). Thank you!
I would be EXTREMELY suspicious of the lithium as a significant trigger
Obviously something going on before that
Have you done a coeliac blood test on yourself?
Widely available online for under £20
Then after testing , (assuming results are negative), trying strictly gluten free diet anyway, for 3-6 months
Ultrasound scan of thyroid is apparently about £300-400 privately
I was lucky my antibodies were so far off the scale they couldn't believe it. TSH was not significantly raised (only went to 8)
I still got NHS ultrasound.....due to extremely bad reaction to Levothyroxine......very long story.....on my profile. Only made progress after over 20 years of hell on just Levothyroxine, after joining here and reading day in and day out.....gluten mentioned again and again....realising just how widespread gluten intolerance is with thyroid
DNA testing is perhaps another avenue for you to explore eventually
Wide range DNA testing for "educational purposes "
Lest we make any assumptions about the impact of lithium, I saw this the other day:
Aust N Z J Psychiatry. 2019 Mar 7:4867419833171. doi: 10.1177/0004867419833171. [Epub ahead of print]
Lithium can cause hyperthyroidism as well as hypothyroidism: A systematic review of an under-recognised association.
Fairbrother F1, Petzl N2, Scott JG1,3,4, Kisely S2,5,6.
Author information
1 Metro North Mental Health, Royal Brisbane and Women's Hospital, Herston, QLD, Australia.
2 West Moreton Health Service, Ipswich, QLD, Australia.
3 Centre for Clinical Research, Faculty of Medicine, The University of Queensland, Brisbane, QLD, Australia.
4 Queensland Centre for Mental Health Research (QCMHR), The Park Centre for Mental Health, Brisbane, QLD, Australia.
5 Metro South Mental Health, Woolloongabba, QLD, Australia.
6 School of Medicine, The University of Queensland, Woolloongabba, QLD, Australia.
Abstract
OBJECTIVE::
Hypothyroidism is a well-documented consequence of lithium treatment. Less well known is a possible association between lithium therapy and hyperthyroidism. This may have clinical implications as rapid changes in thyroid hormones may worsen a person's affective state, while symptoms of hyperthyroidism can mimic those of mania. We therefore systematically reviewed the published literature for evidence of lithium-induced hyperthyroidism.
METHODS::
We searched PubMed, Embase and CINAHL for articles where individuals developed biochemically confirmed hyperthyroidism (with or without clinical symptoms), while on lithium therapy for an affective illness. We included case reports, case series, cross-sectional, case control and cohort studies.
RESULTS::
We included 52 studies, 39 of which were individual case reports and 3 were case series. There were 10 cross-sectional or case control or cohort studies. All the research designs suggested an association between the prescription of lithium and hyperthyroidism. However, these findings were limited by the quality of the included studies, small number of participants and the general lack of either a clear temporal relationship or dose response.
CONCLUSION::
Hyperthyroidism is an uncommon side-effect of lithium compared to hypothyroidism but may have clinical implications. However, large prospective studies are required to clarify this association and to further inform the management of patients treated with lithium where hyperthyroidism occurs.
Indeed, very interesting- thank you. I'll add this into the mix of my considerations! While on lithium therapy for 9 months, I had routine TSH level monitoring every 3 months- the result was only elevated upon one occasion, and FT4 was then checked at that time and was 10. If I am interpreting everything correctly, it doesn't look like I experienced any clinical signs or symptoms of hyperthyroidism during my treatment.
Apologies, I missed the range (I have a big spreadsheet of my historical blood test results, and I had omitted the range on it from the original report).
The FT4 range for Somerset Pathology Services is 7.9 - 20.0, so as far as I can see, I am near the very bottom of the range as an unmediated patient. I've edited it below to show the correct range, and also edited my original post above to show the correct range for FT4.
What's your thoughts now, given the FT4 range? Personally I think that the reference range this lab uses is way too wide (and low)...
50% mid point of the range would be 13.95. When unwell, I am always in the bottom 25% of the range for FT4. In January 2019, when I had that unusual 4 week period of significant recovery and wellness, I was 15.6.
Indeed, I was already historically suspicious of my lithium treatment and the effects it may have had or could cause with long-term use (at no point in my life was I so mentally unwell as to not able to make my own decisions on treatment/drugs, and have a very good relationship with my psych), and I was and had done a fair bit of research. I'm now even more suspicious of it following our discussion, and having also re-evaluated the potential significance of my 4 weeks of much better heath in January/February which coincided with an unusually high (measured, for me) FT4 of 15.6.
I was only ever referred to NHS Psych upon my own insistence and persistence for further professional diagnosis (I felt there was more to it than just "depression", and with my fathers bipolar type 1 history, I wanted some answers), as my previous GP's had only ever insisted between 2008 and 2017 that "you're stressed and depressed, try an SSRI, talking therapies, lifestyle changes, mindfullness etc.", and thus I was prescribed Citalopram (for 4 years, up to 40 mg/day) and Sertraline (switched from Citalopram to this for 2 months in 2017 as I felt Citalopram wasn't effective enough, however Sertraline really didn't agree with me (rapid weight gain, aggression etc.) and I had to discontinue it, with agreement from GP. I struggled with making consistent lifestyle and diet changes throughout this time (I was a business owner and travelling IT consultant), slowly ended up more stressed and heavier etc. I tried mindfulness techniques with limited success. I paid to see two different private talking therapists (cost a fortune over 4 years) with a focus on past trauma, however looking back I really didn't feel that this helped me much over a four year period.
Once under the care of Psych in June 2017 (at this time I was only diagnosed with plain-old unipolar depression), they asked me to try a different type of antidepressant, the SNRI Venlafaxine- in hindsight this was a BIG mistake, as it induced my first, and only ever, manic episode- however I was only ever hypomanic, not full-blown manic. For 3 months I was rushing around doing chores/jobs, making progress on projects I had put off for years, making plans that wern't realistic, had some trouble with sleep and shutting off etc. It wasn't a pleasant experience for myself or family, and my Venlafaxine was discontinued after 3 months. It was later decided that this was a "drug-induced manic episode", and my current Psych doctor says categorically that I should NEVER have been put on an SNRI drug. Lessons learnt all round. They then put me on Quetaipine, which caused me significant drug-induced liver injury (DILI) and totally monged me out and made me unable to function, and then that was discontinued after 6 months (due to the liver injury), and I was transitioned to Lithium and Lamotrigine. The rest from there on out I have already explained, I think
I haven't yet done a coeliac test on myself (or been offered one under NHS), however I had read about the association a bit before our conversation. I will go ahead and take a private test for that, because I want to confirm/eliminate it. Even if it comes back negative, I would then try a gluten avoidance diet for a couple of months to see if there is improvement in symptoms.
Many thanks for the info on the ultrasound. Hopefully, I will get some clarity in the next few days from my TAb's tests, else I may have to go down the private ultrasound route via a private Endo.
Really sorry to hear and read about your own awful experiences, and I hope you can put it all behind you now and have some enjoyment from life again. Your experience does go to demonstrate however, that a mildly/moderately elevated TSH could still be seen with TAb's that are off the scale (maybe also a bit like my wife, with a TSH of c. 6 and TPO of 600+), and thus confirm Hasimoto's.
Both my wife and I (and son) recently had 23andMe DNA profiling done, and we have done a lot of research upon the back of that to try and look deeper into this. However, unfortunately some of the key SNP's like DIO2 are not genotyped by 23andMe. If money wasn't a problem, we would certainly do further DNA assessments re. DIO2 etc. All three of us have significant MTHFR gene mutations, however I won't go into detail on those here unless anyone says it's relevant to know the finer details.
As it stands, my plan is:
1) Await my latest test results, so I have TAb's, rT3, Cortisol, DHEA etc. That should give me a stronger indication of if this is true thyroid dysfunction (beyond just a lowish FT4), or also involves adrenal function (as suspected by Rheumatology).
1b) Test for coeliac and start a GF diet as a test.
2) Depending upon clarity of these test results from point 1, consider proceeding to private Endo and supply all of the info I already have (past bloods inc. all my thyroid test history, adrenal tests, lithium history etc.)
2b) Depending upon where that all goes, and the costs, consider self-trial of T4 once I know how my adrenal function stands.
I'm aware that it can be very dangerous to start T4 therapy in some cases, particularly if you also have a concomitant adrenal function problem (i.e. dysfunctional cortisol levels, in particular low cortisol, as T4 can then precipitate an adrenal crisis). Hence I'm not doing anything hasty until I have the adrenal function data, too.
Yes, several people on here have done 23 and me hoping to use it for medical evaluation, I gather it's not easy to do
The MTHFR gene issue crops up on here quite a bit. May be more common with thyroid issues.....who knows
So you wife will need to supplement a good quality daily vitamin B complex with folate in. Not folic acid, as presumably MTHFR means folic acid can't be processed
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
If thinking of trying strictly gluten free diet, perhaps do it at same time as your wife. See how you both get on
You need to watch for cross contamination of shared butter, jam, cutting mats etc
If toasting gluten free bread, you can get a bag from Coeliac UK to put toast in - in the toaster. ....or have a separate designated gluten free toaster (my preferred option)
Lots of good gluten free beer available these days
The original reason for all three of us all embarking on DNA genotyping was due to suspicion of MTHFR mutations. And my theory on that seemed to prove correct, in that it turns out that my wife and I both have a large number of single (heterozygous) negative mutations across various MTHFR (inc. A1258C) and close association genes such as COMT etc. etc. and a couple of significant double (homozygous) negative mutations. Our son, it turns out, has inherited from us both a REALLY bad deal with his genetics, as he is homozygous for A1258C, as well as several other nasty double mutations. All three of us have problems here, some of them are common and shared, but our son (currently 5 y/o) has it the worst by far.
Indeed, the wife and I have already been supplementing with a good quality B vitamin complex since December 2018 due to these discoveries, and in the last couple of months we also introduced Folinic Acid 800 ug daily (as a well-tolerated alternative to Folic Acid (we were previously on 5 mg Folic Acid, which albeit did no harm, didn't seem to do much good for us either (re. trapped folate issue). Neither of us can tolerate Methylfolate, at least not in recommended standard doses (it's far too potent for us)). We're also doing similar appropriate things for our son, however that is harder for several reasons i.e. a) age-appropriate doses of supplements, b) swallowing pills etc. So as not to muddy the water, I won't explain anything further about our son and his issues on this thread, as that's a whole other kettle of fish.
Many thanks for your tips and recommendations on the B Vitamin's and also re. Biotin (I have read that tip somewhere else before, too). We've been experimenting with several different brands and formulations and each of us has different needs on this front.
To be fair on the gluten free front, we've already discussed going GF for the whole household of the three of us. DNA data obtained in the recent weeks suggests wife and son may be gluten intolerant, whereas mine suggests that I am not likely to be. However, it's just easier all round if we ALL adopt that approach.
My wife and son have recently completed a month trial of lactose avoidance, and have concluded from that that they are both lactose intolerant (and DNA data supports this for both of them). They manage this by avoiding lactose, or using lactase enzyme drops. My data suggests I am NOT lactose intolerant, and I still consume lactose currently.
The next step for all of us will be to attempt a GF diet and see how that goes.
Sadly, albeit I used to love a drink, I haven't really touched alcohol since 2017 upon the advice of the psychiatrist. I will dabble every few months with a glass of wine or one beer, but I'll make sure to go GF on the beer front in future if I do.
I've been doing some more research into specific genes and SNPs related to thyroid conditions, guided in part by the helpful gene list published by Blue Horizon on their own thyroid health reports service (bluehorizonmedicals.co.uk/t... and mapping them to my 23andMe data, which I analyse in SelfDecode and other tools. At the end of the day, I already have the DNA data, and don't need (nor can I afford) to pay another organisation to do the data crunching for me I have a very technical and analytical mind, so thus stuff really interests me and pushes my buttons anyway!
In summary, it's a very complicated picture of both "positive" and "negative" gene mutations for me where thyroid and adrenal function are concerned (and the positive and negative mutations mix together to form a complex median presentation of function in many cases), however, I have a large number of negative SNP mutations which are strongly suggestive of thyroid (both hypo and hyper) and adrenal function disorders. It certainly looks like I will have cortisol hypersensitivity (which would map my life experiences), and that past traumas in childhood could have had a VERY significant impact on my lifetime cortisol sensitivity and long-term stress response (which would make absolute sense to me given my life experiences). And long standing cortisol hypersensitivity (i.e. elevated levels of cortisol, due to a) poor systemic clearance of cortisol and b) other biochemical proteins blocking cortisol cortisol receptor sites) would result in prolonged physical and mental stress response, which may then lead to eventual thyroid dysfunction (and "burnout"). It will be very interesting to see if my 4-point cortisol test comes back showing clearly elevated cortisol (which seems quite likely, but that may have been in the past, i.e. when I was "well" and before I crashed in November), or if it has now progressed to adrenal insufficiency (consistently low cortisol levels), which is what Rheumatology thing may be going on. Although, I currently have to wait until August 2019 for the NHS to do the adrenal insufficiency tests (ACTH dynamic simulation test etc.), unless I can provide conclusive data of my own (by way of my private cortisol and DHEA tests) in the next week or so to bump up the urgency of their testing. I have thought for many months now, that it may well have been a moderate adrenal insufficiency crisis that originally put me in hospital in November, and thus a miss diagnosis opportunity. I did partially recover after 10 days of monitoring in hospital, however I was very acutely unwell and under very close monitoring (30 minute observations, down to 15 minute at some points) for the first 4 days. It seems feasible, that if I had experienced a moderate adrenal insufficiency episode, that my body may have slowly recovered it's cortisol levels, allowing me to "basically function" again, over a few days.
Since that hospitalisation, I have noticed that extreme acute stressors, such as overhearing or witnessing significant arguments or shouting, an acute argument with the wife, sudden startling emergency vehicle sirens, anything that startles me, often immediately precipitates my episodes of collapse and syncope. These could well be late signs of significant pending adrenal insufficiency (genuine thank you to Rheumatology for making this suggestion, but no thanks for how long (6+ months) it's taking to get the tests done on the NHS!).
It is also worthy of significant note, not that my GP thinks any significance of it (I think she is strongly mistaken here), that I was on prescribed corticosteriod nasal sprays for a total of 8 months in 2017 and 2018, most recently a period of 4 months between July and October 2018. This was for persistent rhinitis due to allergies. I have noted, and told my GP's, that I discontinued the nasal spray in mid-late October 2018 (I don't know exactly when), and over the next 2-3 weeks, that is when I started to become most acutely ill, and ended up in hospital when i could take no more on 10th November. I have said, and will say again, that I think the withdrawal of the corticosteriod medication (albeit it was fairly low dose, 200 ug/day Fluctonaise), could well be a huge contributing factor (especially if my adrenal function was already compromised), and could explain that my significant declining health at that time, and ever since, is indeed potential adrenal insufficiency (which should be identified, diagnosed and treated PROMPTLY, as it can be life threatening).
I'm more than happy to quote specific SNP mutations of interest here if anyone feels they are useful for comment, however given the complexity and verbosity of the data, I'll hold back unless someone requests specific gene data.
The one gene I will quote, for interest, is FKPB5 re. cortisol. There are two interesting and relevant SNP's in this gene. I am heterozygous (one mutated allele) for the negative mutation in both of them, which may lead to cortisol hypersensitivity issues (especially in individuals where BOTH genes are negatively mutated, as in my case).
Gene: FKBP5
Summary of FKBP5
This gene encodes for the FK506 binding protein 5 [R]. The protein plays an important role in regulating the immune system [R]. Mutations to this gene that increase FKBP5 levels may cause an increase in stress response. High levels of FK5P5 may also inhibit immunosuppression drugs [R].
1st SNP: rs1360780
My genotype is CT (one negative T mutation).
Mechanism:
Higher levels of FKBP5 protein (T)
Normal levels of FKBP5 protein (C)
The Minor "T" allele is associated with:
- TT (worst) and CT are associated with emotional reactivity and PTSD.
- Enhances risk for depression only in the presence of moderate or severe (but not mild) physical abuse.
- Reduced cortisol sensitivity as well as impaired recovery of cortisol levels in response to stress.
- Childhood trauma= Even more FKBP5 in response to HPA activation.
- PTSD = lower FKBP5 and enhanced cortisol sensitivity, a finding that is in accordance with cortisol hypersensitivity in PTSD.
2nd SNP rs3800373:
My genotype is AC (one negative A mutation).
The A (major) allele is associated with:
Cortisol sensitivity.
AA (worst) and AC are associated with emotional reactivity, PTSD.
It seems very interesting and relevant to me, in that the root of many of my issues could indeed be cortisol sensitivity and past trauma could well have been the trigger. My life has been VERY stressful (and still is).
Couldn't agree more. I think chronic stress, since childhood, and further acute stressors have SIGNIFICANTLY contributed to my issues (and my wife's) massively. I haven't mentioned yet that my father in law (her father) also committed suicide in 2010. For me, that was a big trigger in slowly declining health, until the very rapid decline since November 2018.
When we have struggling thyroid the body often adapts to live off adrenaline.
NHS doesn't recognise adrenal exhaustion, only Addison's
External steroids could well be a trigger as you say
I found propranolol so helpful, even though it slows thyroid uptake and conversion and usually given to hyperthyroid patients. The propranolol blocks adrenaline, reduces demands on adrenals. Allows them to rest and recover
Downside is, Propranolol does apparently also lower magnesium. (Read Caroline Dean - The magnesium miracle)
And I frankly think my thyroid has been struggling for a long time, which may also relate to a lot of issues I've had for 25 years with weight gain, sluggishness, depression etc. etc. In time, perhaps my body has adapted to run on adrenaline as you say. I think I am chronically stressed. And, I suspect, persistently elevated cortisol levels and massively disrupted circadian rhythm as a result, have a lot to answer for.
I just wish I already had these adrenal test results already; sadly my saliva samples are still in the freezer, due to be posted by Special Delivery tomorrow to arrive at the lab on Tuesday. Genova Diagnostics suggest a 16 working day turnaround for that test too
Indeed, NHS do not recognise adrenal issues until it's full life-threatening adrenal insufficiency, i.e. Addison's, hypopituitarism or adrenal cancer etc. in nature. I still do ponder if hypopituitarism is what's going on with me, although it's more likely to be a combination of chronic stress and bad genetics resulting in cortisol hypersensitivity, and sluggish thyroid with low FT4 as a result. Perhaps I also have a significant imbalance in FT3/RT3 ratio, which I have read from many sources can occur after massive weight loss.
I'll do some more reading into Propranolol; I have tripped over it previously during research.
Re. vitamins, supplements, cocktails etc., it's honestly becoming quite overwhelming for us all in this house. We have tried so many things, based upon so many studies and research papers, and we can't really see the wood for the trees now. It's all become a bit overwhelming, especially with NO help from NHS.
Gosh what an awful time you have been through and still experiencing such a lot of terrible physical symptoms. You’ve also been terribly distressed by how your body has been feeling. I’m wondering whether you have considered getting a good therapist to help you through this and also to unpick any early trauma. You’ve probably been offered some therapy through NHS when you were diagnosed with bi-polar - did this help at all? We know that adverse childhood experiences have a massive effect on our physical health and sometimes we need to get help with that alongside getting good medical doctors on our side.
Hey, thank you so much for your kind words. I won't lie, my life so far has been pretty hellish (my father (who was a surgeon) committed suicide when I was 3, my mother (who was an NHS GP) eventually died of several terminal cancers after 8 years of treatment when I was 14 (I found her dead), boarding school (another story on it's own!), bad experiences with a guardian family, ended up living alone an in my own house at age 16 (purchased by estate trustees using proceeds of my parents estate). The NHS never offered me any therapies between 2008 and 2017, until I was under the Community Mental Health Team. I paid to see two private talking therapists with a focus on past trauma, and although it helped me make a few discoveries about how I felt, it wasn't really all that helpful to be honest. In 2018, I was eventually offered Cognitive Analytic Therapy (CAT) under the NHS, and was making really good progress with that after 8 session up to November 2018, when I became very unwell (as described) and then had to suspend the CAT. I'm still waiting to re-start the CAT now, as my appointment slot disappeared of course. CAT has been very helpful, helping too understand unhelpful coping strategies and why they developed etc., and how to change and unpick them. However, there is still a clear and significant physical health issue(s) going on, very acutely since November 2018, which if I can't get to the bottom of, I'll not recover from where I am now.
And yes, I am now very acutely aware of the impact of childhood trauma. And, without tooting my own horn, I experienced a *LOT* of it.
Hi, I really feel for you. I can see why you think it’s thyroid related. Levo is supposedly a pretty benign drug, you could persuade your doc to give you 50 per day and see if it helps (or buy your own). I have many of those symptoms. As to the blurry eyes. I’m beginning to think I get it bad when I eat sugary stuff - what do you think?
Hey, indeed I've been trying to persuade my doctors to re-consider my thyroid as a potential cause for 8+ months now, however so far to no avail (hence coming on here for advice :-)). Cutting a long story very short (re. my above messages), I am very tempted to self-trial a low dose of T4 once I know my adrenal function is OK or not (as else, if my adrenal function (adrenal insufficiency, as suspected by Rheumatology) is a real problem and my cortisol levels are low, taking T4 could precipitate an adrenal crisis. I should have my adrenal function tests back within the next week or two, along with my T Ab's, and will be much more empowered with information by that point. I am sat within 5 meters of a stash of Levo T4, so the drug is physically available to me for this purpose if I can categorically confirm from my results that it is safe to trial. However, of course there are always cases of bad reactions and risks, and if I were to self-trial the medication, and had a bad reaction, that would look very poor in terms of how they would view my mental health (i.e. he is irrational and causing harm to himself). As I mentioned above, shaking a mental health label, especially bipolar, is very, very hard to do- and most doctors in my experience jump to conclusions on it all the time.
Re. the blurry eyes, in my own experience, this symptom worsens for me when I am very cold. And it really doesn't take much to make me cold these days (I'm sat here in a well insulated, centrally heated home with the heating on, fully dressed with a jumper and thermal socks too, with two blankets on, and I'm still freezing cold. If I go outside for 20-30 minutes, even on a sunny winter day, I will get blurry vision within that time and my core temperature drops as low as 33 dec C (hypothermic). And I feel absolutely AWFUL and like I am dying from the cold.
I've been asked to chart my average daily body temperature (6 readings a day, including a basal body temperature reading upon waking and before moving). My basal temp ranges between 32.3 and 36.0 deg C, and I often wake feeling like death from the extreme cold. My temperature jumps around all over the place and often varies by 3 degrees C or more throughout a day (it usually starts very low, and slowly climbs during the day). My GP isn't at all concerned (I'm hypothermic!!!), however Rheumatology are concerned, hence asking me to trend it precisely for a month.
I have a blood glucose monitor, and often check my glucose when I feel unwell (even though I am assured I have no signs of glucose issues or insulin resistance etc.), and also do random checks when I feel "more well". The vast majority of my results show I have normal glucose levels for a non-diabetic, both for fasting tests and post-meal tests, as well as random tests. I have had a couple of slightly elevated fasting glucose levels in the mornings, but by that I only mean a 5.5 when a 5.3 would be the cutoff for top of normal range. And then if I repeat the test immediately, they often come in under below 5.3, i.e. 5.1 or 5.2, so I am not sure how much those are just anomalies.
However, I do have EXTREMELY low fasting insulin levels (<2.78 pmol/L, practically immeasurable by the lab), however my doctors are not concerned about this as my glucose levels are always fine and show my blood sugar is well controlled and within normal ranges for a non-diabetic. I will soon have another fasting insulin result back from Thriva to compare with my other one, so it will be interesting to see what that shows.
My HbA1c (range 20-41 nmol/mol) has always been in range, and most recently sits at 34. So my longer term sugar levels also appear "normal" (albeit, towards the higher end of the normal range).
Hey Trillylil, many thanks for your comments. Indeed, everything feels like such an uphill struggle, and I'm so sick of it being suggested that it's "just anxiety". I was doing pretty well in October 2018 after turning my life around with weight loss, improved diet and exercise, had no anxiety issues, but then became acutely ill over the course of 3 weeks while still actively medicated for bipolar (and no drug changes), and then after being admitted to hospital with that illness, only THEN were my mental health drugs withdrawn as they thought those drugs were most likely causing my bradycardia and all associated cardiovascular symptoms (turns out, they wern't (as there was no improvement from withdrawal), or at least if they were, the effect has been somewhat permanent, as I am still symptomatic, with worsening symptoms and now in considerably more pain too. Multiple joint and muscle pain, continuing chest pain radiating into my left shoulder, back and neck, liver tenderness and inflammation (which I've had diagnosed before in early 2018 as DILI, so I "know the pain" and thus can conclude that it's most likely my liver inflamed again (I;m awaiting private liver function test results presently, as my GP just said "you've pulled a muscle" (a previous GP also told me that last time I had DILI, and they we're proved wrong after an NHS ultrasound and my continuing complaints... it's like history repeating itself again now).
I have experienced tick bites in the past (hiking, cycling on the hills), and have removed ticks from my skin (using the proper technique). I made the NHS aware of this while in hospital in November (last had a known tick on me in about August), and they ran a Lyme disease test which came back negative, as they thought that could also be causing the bradycardia etc. I haven't ever experienced a Lyme rash, however many of my other symptoms could be associated with chronic Lyme disease. I am aware that 20% of Lyme infected patients do not present with a rash, however I have re-raised Lyme as a query since November, and the doctor said "if this was Lyme, you'd be a lot more ill (riddled) by now"). Perhaps my upcoming CT angiogram will shed some light on that, but I'm not sure what they can see so far as Lyme goes on that test.
So many of the doctors I've been seen by simply conclude it must be anxiety because they can find no other cause. And this is why I think this is a long-standing, and now significantly worsening since November 2018, thyroid and/or adrenal problem, and that because I don't have any thyroid test data from when I was "well" in previous years, we have nothing to compare my current results (which are "in range, but low end (FT4)" to show that perhaps my FT4 levels have significantly dropped from where they need to be for me to feel healthy, yet are still "in normal range".
Incidentally on the anxiety "diagnosis", to show that I am compliant with their requests and to try to disprove their "it's all anxiety" theory for good, I accepted some Diazepam from my GP a week ago (I've most recently been prescribed Diazepam (2 mg, 3x a day)) temporarily to "tide me over" in the past during mental health maintenance drug change-overs (i.e. Quietapine to Lithium, which tool several weeks to achieve) and usually have no issue with it (I was on a much higher dose of 5 mg, 3x a day back then, sometimes more as required). However, I begrudgingly started taking it again last week (I am on no other drugs), and it did nothing for the significant genuine pain complaints of course (I am also prescribed codeine for the pain, but find its too sedating and causes awful, unmanageable constipation) and it actually hasn't agreed with me at all this time, either totally knocking me out or making me feel quite wired and agitated at times. I have researched this, and believe that I should not have been prescribed it at all (or codeine, for that matter) with underlying liver injury and bradycardia- as it is likely accumulating in my system to much higher levels, than it would in someone with good hepatic function and therefore good drug clearance. Also, both of those drugs have significantly further reduced my already very low heart rate (I was back down to 38 bpm again) and low BP (back down to 85/50), with all of the associated symptoms of low BP! I've now, in the last 3 days, stopped taking the Diazepam and Codeine in total, and am now again in a significant amount of pain again, as they're really not agreeing with me. My GP is on leave until Wednesday, and no other doctor at the practice will see me in her absence, unless its an emergency, due to the complex nature of my history.
Incidentally, I already changed GP practice in January this year (as did my wife and son), as we felt the quality of care and attitude at the previous surgery was so poor. However, unfortunately it's much the same story at the new practice and with the new GP's. They are very obstructive with me, and just either continue to a) say you must see your own GP as this is complicated and they don't want to get involved, or b) it's all anxiety.
Good shout on the alternative test (and I'm not surprised that the UK test isn't much good (frankly I've long come to the conclusion that there isn't much going for the UK these days, but that's another story!). Lyme, to me, still remains a distinct possibility, however the NHS won't even entertain it anymore as "you had the test in hospital, it was negative". Meh.
I will do some more reading re. the alternative Lyme test. All of this testing is understandably very hard financially when you haven't been able to work since June 2017, lost your own business as a result, lost your family home, lost all your savings due to the financial pressures and needed to rent for a fair while (while we found a more modest home to purchase, while we are now at least in mortgage free), then becoming so ill (since November) that my wife lost her job (they wouldn't let her reduce her already part-time hours any more) to become my full time carer. We now absolutely rely upon the benefits system (Universal Credit, PIP, Carers Allowance etc.). I have, as it stands, been permanently signed off of work by Universal Credit (Limited Capability for Work and Work Related Activity (LCWRA) awarded in February), awarded PIP for disability, yet I am desperate to get well again, get back to work (part-time while recovering), be a proper physically-capable father again, and help my wife and son by recovering (and so my wife can get her life back too!).
I do wonder if I should consider a repeat Lyme ELISA test, for the bargain price of £49... I haven't been tested since 11th November 2018. But then again, just because that could come back negative again, doesn't mean the infection isn't there (and a western blot test would be required, however those are mega bucks, and most labs won't complete one without a prior positive ELISA result).
Although, private bloods always cost me more than the test fee alone, as I have to have to pay for a venous blood drawn as my peripheral circulation is now so poor that I can't bleed sufficiently for a finger prick test (even with 10 lancets and lots of preparation to improve blood flow!)
My understanding is that the Elisa and Western Blot test are not very effective in diagnosing Chronic Lyme disease beyond the acute stage as they show a high percentage of false negatives.
Do some research into Armin Laboratory in Germany to see if you think this is an unexplored avenue that may give you some answers.
Someone else has posted the Caudewell charity link. I’m sure there will be lots of information on there.
Please report back in the future with an update if you’ve found any thing that helps.
You mention you have a double mutation of the MTHFR - this is very significant re: mood issues, cancer, heart health, diabetes. Make sure if you supplement folate, you only use the co-enzimated version 5-MTHF and Not folic acid. Those of us with that mutation are bad at converting folic acid to the version our bodies need. You probably know this from your research but I thought I'd mention it.
Good mention of lithium by SlowDragon - lithium can also cause an increase in the parathyroid hormone in turn causing strange but sometimes vague symptoms including confusion, anxiety, insomnia, weight gain, muscle issues (swallowing, balance). Unlikely that is the sole cause & doctors are unlikely to look into it unless you have high blood calcium levels, but it's something that popped out to me when you mentioned lithium and some of your symptoms.
I wonder if you need more dopamine. How did you feel on the quetiapine? Looks like it blocks dopamine.
I am interested to see your B12/folate/ferritin/cortisol results. I sure hope they (you!) can figure this out, and things start improving.
My Methylation SNP mutations of particular note are as follows. I won't muddy the water by quoting the results for my wife or son on this thread.
Sadly, 23andMe don't genotype a lot of the Methylation SNP's, so there are a lot that I don't have results for. We have considered (but can't currently afford) to obtain a second overlapping set of data from Ancestry, as they genotype some SNP's that 23andMe don't, and then merging the results for a fuller picture.
COMT V158M +/+ (AA)
COMT H62H +/+ (AA)
VDR Taq +/+
MTHFR A1298C +/- (GT)
MTRR A66G +/- (AG)
SHMT1 C1420T +/+ (AA)
Indeed we are aware of the Folic Acid conversion issue, and have adopted Folinic Acid 800 ug/day as an alternative, as I (all three of us) really can't tolerate Methylfolate (or B12 specifically as Methylcobalamin, we found out the hard way- too much Methyl)- it causes significant agitation, "wired" feeling, shaking, headaches etc. at a "standard" 400 ug dose. I appreciate this may well be too high a dose for someone with my (our) genetics, however I haven't explored that much further as yet (we're all a bit overwhelmed at the moment).
Re. lithium and parathyroid, indeed I had most of those symptoms while on lithium, and I can confirm from my massive blood test spreadsheet that my serum calcium levels were NEVER tested while I was actively medicated on lithium (only before, and after). It sees quite possible that my calcium could have been elevated while on lithium, but I will now never know. I can confirm that my serum calcium levels were all "in range" both before and after lithium treatment, and they most recently stand at 2.51 mmol/L (range 2.1-2.6).
Re. Quetiapine, I felt like DEATH on it (they also put me on Pregabalin at the same time for anxiety, which made me rage, and had to be abruptly discontinued in A&E). Quetiapine made me slow, tired (slept all day long), massive appetite and weight gain. I shut off from the world for months. It was only when it caused me DILI, and they EVENTUALLY diagnosed that after I pushed for a liver ultrasound (as I knew it wasn't a pulled muscle!!), they pulled me off of it urgently, put me on Diazepam for a few weeks, and then transitioned to lithium. I felt awful, it was a really bad time (mentally). This was all before I managed to "turn my life around" and loose 45 kg, after starting on lithium + diet + exercise. I became MUCH more mentally unwell after they started medicating me, than I was BEFORE I ended up under psych (I was only every unipolar depressed and stressed before).
I too CANNOT WAIT to get these latest results back, and my first set of "full" thyroid and first set of adrenal function tests. I will be sure to post them in the coming days/week or so, and hopefully come up with some answers!
N.B. also the inherited MTHFR mutations probably explain why my mother was riddled with cancer from her mid-40's and died at 57 from multiple cancers and heart failure, why my father was type 1 bipolar and committed suicide, why my maternal grandfather died of heart failure, and why my paternal uncle and paternal grandfather are/were type 1 diabetics. But genetics "wern't a thing" back then.
The reviewing GP has commented on my high TG Antibodies, and stated (of course) that this is associated with Hasimotos, however he has also stated that at this time, my thyroid function appears to be normal (and I would tend to agree...based on these results). However.....
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I am quite concerned that my FT4 has been swinging between c. 10 (bottom of normal range) and 21 (top of normal range) over the last 6 months. Admittedly, the historical FT4 results I have are from different labs and thus the results may not be strictly *directly* comparable, however all labs involved use very, very similar reference ranges, so I am liable to think that it is reasonable to make comparisons between all of my historical FT4 results:
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NHS Somerset Pathology Services: FT4 range 7.9- 20.0 pmol/L
Medichecks/Thriva (County Pathology Ltd, who are a NHS lab also): FT4 range 12.0-22.0 pmol/L
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Please do note that I suffer from "bipolar disorder" (unmedicated since November 2018) and, coincidentally, suffer from swings of mental and physical health symptoms over similar time frames to those of my FT4 level swings. It all seems very coincidental...
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Would it be a fair observation (this is my current suspicion, at least) that I am swinging between sub-clinical hypothyroid and sub-clinical hyperthryoid states, and that this could be a reasonable explanation for the drastic swings in my mental and physical health symptoms?
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Also of particular note: I have this last week seen a private liver specialist consultant in London (as my NHS GP practice wouldn't even acknowledge my symptoms... "it's all just anxiety!", GP said), following a reemergence of pain in the area of my liver (I have previously been NHS diagnosed with NAFLD, and experienced liver tenderness/pain in March 2018). Long story short, gallstones have been diagnosed by private scans this time and I have been recommended to have my gallbladder removed (on the NHS). The most interesting point is that, upon taking a full history including my extreme GP-guided weight loss, the private consultant strongly believes that I likely experienced a state of "unintentional internal nutritional starvation" in the second half of 2018 (which was what put me in hospital in November). Frankly, I couldn't agree more, and feel that this is very relevant to my symptoms and overall health complaints since mid-2018 (and I'm still not yet fully recovered). It may well explain some of my historically abnormal thyroid results, too.
Vitamin B9/Folate: Due to confirmed MTHFR mutations and previous low-normal lab results, I take daily supplemental Vitamin B9 Folate @ 800 ug Folinic (not Folic, due to MTHFR mutations) Acid since January 2019.
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Vitamin B12/Cobalamin: Due to confirmed MTHFR mutations and previous low-normal lab results, I take daily supplemental Vitamin B12 (as HoCbl+AdoCbl combined) @ 2000 ug combined (50/50% split) since January 2019. I am also prescribed HoCbl injections, and have received 42x injections on alternate-day frequency between January and March 2019, and am now down to 2-monthly frequency injections (as per NICE guidelines for neurological involvement).
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Vitamin D: Due to previous low Vitamin D (and high suspicions of Vitamin D deficiency), I supplemented daily with Vitamin D3 between January 2019 and March 2019 @ 2000 IU/day (following a much higher loading dose course in December 2018 of 50,000 IU/day for 15 days). I stopped taking supplemental D3 as of mid-March 2019 once I was back in the "optimal" range, however I will need to reevaluate the need to restart supplemental D3 based on future test results (especially for future winters).
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Iron: After commencing the prescribed Vitamin B12 injections, I rapidly became borderline iron deficient (my pre-B12-injection Ferritin was 90, and dropped to only 40 within 3 weeks of injections). I was prescribed Ferrous Fumarate @ 2x 322 mg/day (equivalent to c. 200 mg non-heme iron daily) for 3 months between January and March 2019. I am no longer taking iron at this time, but need to evaluate the need to include low-dose iron daily for prophylaxis of future iron deficiency.
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Multivitamins+Minerals: Given suspected multiple nutritional deficiencies, I also supplement (since December 2018) with various potent multivitamin+mineral supplements which cover most of the other nutrient bases. For those that like details: Holistic Health All in One™ Multi-Vitamin, Holistic Health Ultimate B Complex, Holistic Health Black Bear Energy Spray, Holistic Health BeCalm Spray (holisticheal.com). These have worked well for me and I tolerate them well, albeit I am desperate to find a more financially economical solution!
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Omega 3: Upon private GP advice (following abnormal Omega 3 index and Omega 6:3 ratio lab results), I have been supplementing daily with a potent 1x Omega 3 fish oil 1000 mg (containing 550 mg DHA per 1000 mg). This has recently been increased to 3000 (containing 1650 mg DHA) mg/day (more on why below).
N.B. I'm still waiting for my adrenal function test results from Genova Diagnostics Salivary 4-point Cortisol+DHEA+Sec IgA results (due 23/04/19).
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However, following further research and advice re. HPA-axis disfunction, I have already started supplementing with (additional) Omega 3 fish oil (3000 mg/day, containing 1650 mg DHA) and have also introduced Phosphatidylserine (PS) (initially 100 mg/day, now 600 mg/day) - and WOW! What a difference these two supplements have made to my BODY TEMPERATURE REGULATION! Within 3 days of starting the PS, my body temperature has now returned to "normal", regulating between 36.0 and 37.0 degrees. I have suffered since October 2018 with *WILD* fluctuations in body temperature between 33 and 38 degrees (with associated symptoms, most notably constantly feeling FROZEN, but no doubt also having a profound effect on my metabolism).
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I'll stop here for now, as I know I'm rambling... sorry, but there's a lot to say! Many thanks to you all as always for any input you can offer
Not that you want to take more supplements, but wondering if you would benefit from B6 in the P-5-P form? Look up Pyroluria - probably unlikely, especially since the fish oil has helped you (those with pyroluria need more Omega-6), but those who have pyroluria are low on B6 and zinc, and this causes a lot of symptoms.
We have many of the same issues - I have high TG antibodies, gallstones. I have that same COMT you do - Self-Hacked says I should be high on dopamine, but I know I'm not. In any case, B6 is needed to create our neurotransmitters.
the Holistic Health B complex doesn't have P5P, and also contains some folic acid.
Work on your liver health too, I think that is key for us.
I'm going to look up your findings on the cortisol gene when I have more time.
My wife and I explored the possibility of pyroluria a few months ago, and we felt that it likely applied to her, but not so much to myself. (She's been taking B6 as P5P at night, along with additional zinc and magnesium for a few months (she showed as deficient in zinc and magnesium on hair mineral test in January)); it's hard to know how much it has helped, as she has also been diagnosed with and started treatment for Hasimoto's during this same time frame, as well as Iron and B12 deficiency anaemia's.
Interesting to hear that you also have trouble with gallstones, and have the high TG Ab's too. Do you know of any other possible genuine autoimmune cause of your high TG AB's, i.e. Type 1 diabetes, Pernicious Anaemia etc.? Ref. healthline.com/health/antit.... I'm struggling to make real sense of my elevated TG AB's, although more recent slow onset of blood sugar disregulation, and thus possibly diabetes, causes me some concern.
Are you taking P5P? If so, how much? Have you found a measurable benefit (if so, where?)? Perhaps it is a missing link for me (the wife takes 50 mg Solgar P5P at bedtime, so we have a supply). I've previously been diagnosed bipolar type 2 (after years of recurring depression), so I know I have neurotransmitter issues, however unfortunately, I don't know with exactly which ones. I have experienced limited success with the SSRI's Citalopram and Sertraline in the past, however Sertraine doesn't agree with me at all. Accordingly, perhaps we can conclude that my Serotonin is inbalanced/low. I've also been on the mood stabilisers Lithium Carbonate (and Lamotrigine as an adjunct) previously, which albeit beneficial to my mood stability at the time, it seems to have possibly had a lasting effect on my thyroid (that's one of the suspicions raised by SlowDragon re. my raised TG Ab's and previously low-normal FT4, which massively waxes and wanes in coincidence with my symptoms).
"the Holistic Health B complex doesn't have P5P, and also contains some folic acid.
" - I agree; the small amount of Folic Acid in it doesn't seem to present too much of an issue for me, however I take most of my Folate as the alternative Folinic Acid in an 800 ug capsule/daily, plus a very small amount of L-5-MTHF in a Holistic Health Spray. I could try adding in P5P too, as we already have that as a separate supplement. I'll wait for your thoughts on P5P.
How are you addressing your liver health specifically please? I agree, I think it is likely a big part of the puzzle and key to the problem. I'm still working to improve my diet even further (we're now a gluten-free household (re. wife Hasimotos), my diet is largely fruit+veg, good nuts and seeds, white meat, eggs (yes, cholesterol, I know). I do still have dairy low-fat cheese and milk, plus some red meat occasionally, and some processed meat such as bacon medallions and ham. I would be lying if I said I didn't still eat cake/biscuits/pudding (nasty saturated fats) from time to time, but have drastically down on them). I'm trying to be lower-carb, higher protein+healthier fats, getting back into my exercise routine (after several months of very little, while I have been really quite unwell). On a good, average week, I'd clock up about 250 km on my bike, plus some walking.
I really think you may need more dopamine - in light of your bad reaction to the Quetiapine, and other symptoms. Some of us don't need more serotonin; personally Lexapro made anxiety worse. I take Wellbrutin - it helps the brain retain dopamine and noepinephrene. For some, noepinephrene makes them jittery, but not for me and others I know. Wellbrutin sometimes makes me sleepy. For awhile I took 1/2 tab before bed. I don't like taking brain-altering chemicals, but need to function and be happy while figuring out things. I ease off in the summer. Maybe Wellbrutin is worth a try for you.
I take 50 mg. of P5P in my Activated B-Complex from Swanson (25 mg. 2x/day), and additional 20 mg. 3 other times a day, and 50 mg. at bed. You are not supposed to overdo B6, so don't do what I do, and I do try to get it from my foods, but I don't feel I absorb things. I get "trigger finger" if I don't have enough B6, where my fingers lock up in a curled position.
I'm just thinking the B supplement you take seems expensive so maybe you could find an alternative without any folic acid.
What does folinic acid (vs. 5-MTFH) do? I took it for awhile, thought it helped me sleep.
For liver - milk thistle supplement - I take Now Foods double strength Silymarin with dandelion root and artichoke. Also take N-Acetyl-L-Cysteine. I know Dr. Amy cautions against this one, I don't know why. But it helps your liver make glutathione. I would take it for the occasional hangover, but I felt good on it, so take it routinely later afternoon & I seem to sleep better.
years ago I did a liver cleanse, need to do that again, just eat fruit, vegetables, lean limited protein, and liver supplements, Felt lighter, lost weight. I did a food elimination thing recently, only lasted 5 days LOL, but I LOVE cheese however found stomach not so bloated without dairy..
Also your liver does a lot of it's work at night so I try to not eat much after an early dinner. Although I found if I don't have enough sodium before bed, I keep waking up.
I guess it's hard on one's liver to digest fat and protein. although I do feel people need fats, you need fats/cholesterol to make hormones. I won't give up eggs either. OK - when my cheese is gone I'm trying liver cleanse again. Although I do feel better when I eat beef!
Next week I'm having all kinds of bloods done. My ferritin was lowish - low iron affects dopamine production.
I don't understand the TGab antibody. I asked my endo (GP ordered the test) and she said she only orders TG antibody test if a patient has had thyroid cancer. So still no answers there either. The only thing that makes sense to me is Anthony William's theory about the Epstein-Barr virus causing antibodies. He says the body does not attack itself. But I have yet to find an answer as to why one's TGab antibodies are high, but not the TPO.
I have been gluten-free for years, noticed no mood difference. A previous dr. told me that Armour thyroid can cause high antibodies.
I suspect I had/have H Pylori which affects absorption. I do take digestive enzymes with betaine but I still feel like I'm not getting nutrients from food. Just the calories!
so I have no clear answers! these are just things I've noticed.
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