My Story So Far (Help/Advice Needed)

Here you can introduce yourself and give an account of your medical history, visits to physicians, results of treatments, etc.
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Joined: Sun 9 Apr 2017 18:38

My Story So Far (Help/Advice Needed)

Post by mattioso » Sun 9 Apr 2017 18:44

Hi all! This is going to be quite a long post as I'd ideally like to put everything out there, if anybody is able to offer advice or comments on my treatment or diagnosis I'd love to hear it

Summer 2014-September 2014
My first recollection of symptoms was over Summer 2014 while I was working away at a summer activities camp in Malvern, predominantly fatigue. I’ve since seen in my medical records (although I don’t recall the appointment), that on September 4th 2014 I went to the GP to complain about these symptoms, also noting I experienced fever, aches and ear pain, which the doctor said sounded like a viral illness. While at the camp however I do also remember often feeling extremely hot and sick.
After a blood test showed slightly abnormal thyroid levels I was started on 50mcg Levothyroxine and diagnosed hypothyroid.

Dec 2014
The thyroxine initially appeared to ‘take the edge’ off of the symptoms somewhat, this didn’t last long though.

Jan 2015-Summer 2015
I grew more and more ill as the weeks went by. I struggled to get out of bed for lectures, began suffering terrible attentive and ‘ADHD’ type symptoms as well as dry scalp, depression, weight gain etc. I foolishly took it upon myself to double my dose to 100mcg, and after experiencing the same ‘honeymoon period’ as I did when I was first diagnosed, doctors were ok with it.

Summer 2015
Opted to retake my second year of University due to the way in which my thyroid was affecting me.

Summer 2015-December 2015
Symptoms at this point are life-ruining. I’m unable to function day-to-day, I’ve stopped working my part-time security job completely, crippled by fatigue, can barely string a sentence together, and ultimately drop out of University for the year.

February 2016-May 2016
Opt to travel down south to visit Dr Peatfield upon the advice of online thyroid help forums. After a lengthy discussion he concludes that I’m not hypothyroid and that the medication is doing me more harm than good. As per his request I stop taking the medication, test after 12 weeks to ensure its all out of my system, and remarkably display normal thyroid results for the first time in years. The same lot of testing also flagged me up for a viral infection, but after further testing that idea was dropped.

Summer 2016
I return to work at the summer camp in which I first fell ill at in 2014. An incredibly active job that I struggle to cope with, I felt as if I had to fake it somewhat, with every hour not spent working I was in bed attempting to make sure I was ready for whatever task would come next.

September 2016-November 2016
At my sickest of all. Awake no more than 8 hours a day unable to focus on basic tasks. Diagnosed with Chronic Fatigue and referred to a clinic which I am due to see in coming weeks.

December 2016-Now
I do feel somewhat brighter over the last few weeks, there are many symptoms I’ve not experienced in quite some time such as stomach issues. At this point I’m not sure if what I consider ‘normal’ is what others would, or just the level in which I’m able to get out of bed and function.

Fatigue – Crippling and by far the worst symptom I experience. Varies from a bit of a drag I have to power through during the day to 3 days absolutely motionless in bed. I believe this to be the primary cause of the depression and motivation issues.

Brain Fog/ADD/Memory/Zombie-Like – While this did significantly improve when I came off of levothyroxine, I still have terrible issues with brain fog. I feel before my diagnosis I was significantly more sharp and quick-witted which has now completely faded, I also struggle making notes in my lectures and often have shockingly poor recollection, mainly of past events. Also occasionally feel faint and light-headed, particularly shortly after waking up.

Loss of Motivation/Depression – After looking into it a little bit the issue definitely seems to be dopamine over serotonin (If my understanding is correct). Obviously the situation of dropping out of university twice brings me down, but generally within myself I am happy and optimistic. The issue comes with motivation, bringing myself to go and engage in things I enjoy, largely I feel because I’m too tired to do so. Loss of libido, neglecting hobbies and projects I’d like to be engaging in etc.

Allergies – Constantly sneezing and year round hay fever symptoms. Back using asthma inhalers once again (haven’t used them since childhood), occasional itching of the skin particularly on my hands. Known allergies are to dogs, cats and dust.

Weight Gain – Put down to a combination of an inability to exercise and little waking hours leading to a poor diet.
Joint and Muscle Ache – A quite mild symptom but one I’ve dealt with throughout the ordeal. Predominantly random and unexplainable muscle pain, I ache more now for no reason than I did when I’d had a hard workout before this illness.

Exercise Intolerance – At my worst the thought of exercise made me feel physically ill.

Headaches – Experienced in two bouts, around March 2016 and November 2016. The doctor believed them to be migraines but to me much closer match the description of cluster headaches. The pain is incomparable, you simply want to die while experiencing them.

Stomach and Digestive Issues – A later onset symptom (again around March 2016) but one that became very bad. Best described as simply digestive ‘issues’. At any given time a combination of pains in the stomach, bowels and rectal area, changes in appetite, diarrhoea, constipation. One instance of what we thought was a urinary infection (peeing every 20 minutes) that eventually went away.

Weather Intolerance – Always been a perpetually warm individual, but find myself unable to tolerate even mild to moderate warmth anymore. Sometimes however I can wake up and experience the total opposite, literally shivering and shaking if it’s even slightly chilly.

Sleep Disturbance – Ongoing throughout, obviously linked to the fatigue. No consistent sleeping pattern for the last few years, I’ll be doing really well for a few weeks waking up early, then one day 3 hours into my day I’ll feel an overwhelming urge to sleep at lunchtime.

Facial Rash/Blotches – Only came about within the last couple of months. Seemed very similar to the Lupus butterfly rash. Hot red blotchy cheeks and occasionally on my biceps also. Very little irritation, the main issue is simply how it looks

Muscle Spasms – Again only came about within the last few months and isn’t particularly disturbing. Only really noticed in my triceps and in my calves.

Blood Results *** = flagged result

September 10th 2014 Lymphocyte & Monocyte both verging on too high, Serum ALT, test that led to the Hypothyroid diagnosis
Neutrophil count 4.4 2–7.510*9/L
Lymphocyte count 4.3 1-4.510*9L
Monocyte count 1.2 0.2-1.210*9/L
Eosinophil count 0.3 0.1-.610*9/L
Basophil count 0 0-.210*9/L
Serum total protein 74 60-80g/L
Serum albumin 48 35-50g/L
Serum Alk phosphatase 117 30-130iu/L
Serum ALT level 73 0-45u/L ***
Serum total billrubin 10 < 21umol/L
Serum TSH level 9.5 0.55-4.78mu/L ***
Serum T4 level 17 9-23pmol/L
Full Blood Count All Normal

01 Dec 2014 (on 50mcg Levo)
Serum TSH level 1.9 0.55-4.78mu/L
Serum T4 level 18 9-23pmol/L

14th May 15 (on 100mcg Levo) Phosphatase high, ALT over range,
Neutrophil count 2.6 2–7.510*9/L
Lymphocyte count 3.5 1-4.510*9L
Monocyte count 0.6 0.2-1.210*9/L
Eosinophil count 0.2 0.1-.610*9/L
Basophil count 0.1 0-.210*9/L
Serum total protein 71 60-80g/L
Serum albumin 45 35-50g/L
Serum Alk phosphatase 127 30-130iu/L
Serum ALT level 64 0-45u/L ***
Serum total billrubin 11 < 21umol/L
Serum TSH level 1 0.55-4.78mu/L
Serum T4 level 17 9-23pmol/L
Full Blood Count All Normal

13th August 2015 (on 100mcg Levo, upped to 125mcg following this)
Serum TSH level 2.4 0.55-4.78mu/L
Serum T4 level 17 9-23pmol/L

17th November 2015 (on 125mcg Levo) TSH below range
Neutrophil count 3.9 2–7.510*9/L
Lymphocyte count 4.1 1-4.510*9L
Monocyte count 0.8 0.2-1.210*9/L
Eosinophil count 0.2 0.1-.610*9/L
Basophil count 0.1 0-.210*9/L
Free T3 6.4 3.5-6.5
(17th Nov 2015 tests continued)
Serum TSH level 0.39 0.55-4.78mu/L***
Serum T4 level 20 9-23pmol/L
Full Blood Count All Normal

21st December 2015 (On 125mcg Levo) TSH below range
Free T3 6.3 3.5-6.5
Serum TSH level 0.35 0.55-4.78mu/L***
Serum T4 level 23 9-23pmol/L

Summer 2016
Don’t have access to results as they were at another GP, my thyroid levels came back normal however indicating that I was not hypothyroid, and neutropenia was consistent with viral infection

12th September 2016 No Thyroxine
Serum TSH level 1.5 0.55-4.78mu/L
Serum T4 level 16 9-23pmol/L
Full Blood Count All Normal

16th September 2016 All Serum liver function quite high, ALT over range, Full Blood Count was normal 4 days ago but now is not, high lymphocyte and neutrophil, low vit D
Neutropenia Lymphocytosis, activated lymphocytes + film consistent with viral infection
Serum total protein 76 60-80g/L
Serum albumin 50 35-50g/L
Serum Alk phosphatase 127 30-130iu/L
Serum ALT level 46 0-45u/L ***
Serum total billrubin 10 < 21umol/L
Full Blood Count All normal except
Total White Cell Count 13.1 4-11***
Lymphocyte count 6.1 1-4.5***
Vit D 33 > 51*** (started on supplement)

1st December 2016 All Serum Liver results high end again, high monocyte low eosinophil, high Serum C reactive protein
Serum total protein 75 60-80g/L
Serum Alk phosphatase 104 30-130iu/L
Serum ALT level 40 0-45u/L
Serum total billrubin 15 < 21umol/L
Serum TSH level 0.9 0.55-4.78mu/L
Serum T4 level 12 9-23pmol/L
Serum C reactive protein 33 0-5***
Full Blood Count All Normal Except
Monocyte Count 1.3 0.2-1.2***
Eosinophil Count 0 0.1-6***

15th December 2016 High platelet count, high phosphate (put down to vit D sup)
Full Blood Count All Normal Except:
Platelet count 419 150-400***
Bone Profile All Normal Except:
Serum inorganic phosphate 1.68 0.8-1.5

Things tested at least once that have come back normal
Thyroid peroxidase antibod lev
Plasma glucose level
Serum creatinine
GFR calc abbreviatd MDRD
Erythrocyte Sedimentation rate
Urea and Electrolytes
Anti-nuclear factor
Infectious Mononucleosis

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