First, please let me apologise for this long post!
Background: I have had diagnosis of ME/Fibro/Trigeminal Neuralgia for 29 years. Got very ill, very quickly at age 38 (so I'm now 67).
I started having symptoms similar to what my mother had, and she nearly died from Hypothyroidism from 'in range thyroid tests'. I asked Doc for blood tests in March 2017 and then further info in May for B12, Ferritin and Serum Folate ~ and then was advised to get copies of my Blood Tests (didn't know I could even ask!) and I started to slowly see that many readings had been ignored by the Surgery when it should have been possible for them to tweak things here and there ~ and as for my hair loss, which is almost looking like 'male pattern baldness', the Doc isn't at all interested.
However, with the help of HU and reading a bit, and getting quality advice, it's been suggested that I ask for advice from your forum re potential PA, and would very much appreciate your help and advice please?
Due to some apparent plunges in certain levels (see below), I'm having further Private blood tests done by a different service and will post these when I have them.
The Surgery were adamant that they wouldn't accept any blood tests that weren't done by the NHS. Initially, I didn't even know, or have the brain space to take the time to think, that the NHS 'outsources' their blood tests. I've been in "D'Uh" mode for quite a while now. Very brain fogged (concentration of a debilitated gnat!), suddenly taking much longer to heal, having constant/repeated infections / inflammation (had a sudden onset of a massive gallbladder inflammation, even though an earlier ultrasound which I was told was for my intestines (I've IBS) also, involved an extremely painful check of my gallbladder which showed no obvious stones but which U'm pretty sure caused the infection/inflammation of my gallbladder, in conjunction with me wanting a real cream doughnut at Easter (no easter eggs for me!) and at that time I was gluten-free and no doubt I gave my system a heck of a shock! (Oops ~ my bad!)
Onto the bloods:
NHS Blood Test 2 May 2017 ~ 25OH VITAMIN D ~ 46 nmol/L ~ Insufficient Range: 25 - 49.
I spoke with Doc re this and said that rather than annual Injections, I'd probably be better on tablets. That was totally ignored.
I checked with the District Nurse and she said I wasn't due a VitD injection again until December! So from December 2016 to 2 May 17, I'd sunk into the 'insufficient' range (without an injection due for a further 7 months), and come July, I'd sunk even further into the insufficient range.
MediChecks 28th July 2017: Blood Tests (Tests NOT accepted by Surgery, as not NHS):
25OH VITAMIN D ~ 39.3 nmol/L ~ Insufficent Range 25 - 49
NHS 2 MAY 2017: Ferritin 117.2ug/L ~ 12 - 300
MediChecks 28 JulyFerritin88.5ug/L ~ 13 - 150 (Not Accepted by Surgery but is at least within range.)
NHS 2 MAY 2017: B.12 ~ 349ug/L ~ 211 - 900
MediChecks 28 JulyB.12 ~ 98pmol/L ~ 140 - 724 (Not Accepted by Surgery)
NHS 2 MAY 17 Serum Folate: 6.7ug/L 2.4 - 20
MediChecks 28 July Serum Folate: 0.91ug/L ~ 2.91 - 50 (Not Accepted by Surgery)
MEDICHECKS DOCTOR'S COMMENTS: (Not accepted by Surgery!)
B.12 Recommend checking full blood count, intrinsic factor antibodies and gastric parietal cell antibodies to assess this further.
Serum Folate: Recommend checking your red cell folate to assess whether this is significant.
Vitamin D: Recommend supplementing 800 - 2000ui/day for 12 weeks.
MediChecks Doctor's comment: The presence of multi vitamin deficiencies raised the possibility of an absorption problem and should be discussed with your GP.
(I might as well talk to the wall, as talk to the Doc ... but where the comments are "not accepted by the Surgery", I now know that Healthchecks 'outsource' their blood tests and results should be accepted by the Medical Practice..!)
These could be responsible for the symptoms that you are experiencing.
Some of the the results are SO different from the MAY 2017 "NHS" results ~ apart from self-medicate to attempt to feel better, I'm feeling I've no other choice.
Also: GP ignored 4.4 x CRP High Sensitivity "NHS Results" which they did, and the Medichecks CRP High Sensitivity was nearly double their highest range.
HERE COMES THE "PLEASE HELP AND ADVISE FURTHER" PART:
MY HISTORY OF LOOKING INTO POSSIBILITY OF HAVING HYPOTHYROIDISM, as mentioned, were because of my mother's history ~ and, the symptoms are spookily like M.E./FIBRO.
Firstly, my Thyroid results are 'within range' ~ and nothing's going to be done about them via the NHS (an all too common a story), despite the fact that my Mother nearly died from many years of having "normal Thyroid results" (she was verging on a Hypoythyroidism Coma), when my father demanded a house call from her Doc, and fortunately a Locum Doc was sent, who'd no pre-conceived ideas about my mother (who by that time had been 'written off' as an over-anxious/nuisance patient) ~ and the Locum had her in Hospital within 1/2hr, where she remained for approx 3 months!
I've no desire to go the same way! All MediChecks found re Thyroid was that I'd FT3/rT3 ratio which was low 13.24 (Range 18.01 - 78.00) and could suggest that I'm not getting sufficient FT3 into my cells. He made it clear that I was unlikely to get any help via the NHS, given my other readings were "in range".
NHS RESULTS 23/3/17:
TSH:2.15Mu/L ~ 0.3 - 6.00
Free T412.6pmol/L ~ 9.00 - 24
Free T34.1pmol/L ~ 3.5 - 6.5
Peroxidase ABs<1.0U/mL ~ <6
(I have received no Thyroid Treatment at all, not even a small trial of meds, despite advising Doc of my late Mother's situation of 'normal range' Hypothyroidism tests, and how much damage they'd caused her!)
CRP - High Sensitivity: 44mg/L ~ 2.0 - 10.00 (4.4 times upper limit ~ MARKED by Surgery as "No requirement for further action!" (Words to that effect!)
Based on comments when I put the original NHS RESULTS on the Forum, I'd been advised that FT4 and FT3 are better IF at higher range, and the TSH of 2.15 it was too high to feel well, and that the results showed that my Thyroid was 'struggling'. I feel very far from 'well'. Despite having M.E./FIBRO, this has been the worst year EVER!
MEDICHECKS RESULTS: 28TH JULY 2017.
TSH:0.655mIU/l ~ 0.27 - 4.20
Free Thyroxine`13.9pmol/L ~ 12.00 - 22.00
TOTAL T.490.4nmol/L ~ 59.00 - 154.00
FREE T33.66pmol/L ~ 3.10 - 6.80
REVERSE T318NG/dL ~ 10.00 - 24.00
RT3 Ratio13.24 ~ 15.00 - 75.00
Peroxidase ABs11.5IU/mL ~ 0.00 - 34.00
Thyroglobulin <10IU/ml ~ 0.00 - 115.00
CRP - High Sensitivity 9.9mg/L ~ 0.00 - 5.00 (Almost double higher range) ~ MediChecks Doctor's Comments: Check urgently with GP (What? And be ignored yet again?)
For years I've had 'rib pain' but thought that was just the ME/Fibro (the pain feels like a nasty 'hug' and I've had to put extenders in the back of my bra, as and when I can wear a bra.
Sorry, I'm all over the place ~ I don't know which 'symptom' actually belongs with what 'diagnosis' (?), My spine is in agony ~ I was told (when I finally got an x-ray that I'd been asking for, for two years, that the discs in my neck were 'thinning' and would crack and I'd have a lot of pain (what, like I've had a picnic of a time over the last 29 years? ) ~ and two have cracked and now I've got 'old lady back' worse than my Nana had at age 96!
When I bend my neck forward, I get massive waves of pins and needles from the tips of my toes, right up to my knees. I've had dual carpal tunnel syndrome for more years than I can remember.
I've had chronic Insomnia for approx 23/24 years: I have been taking 10mg of Nitrazepam for years ~ I came off of it for 5 years, and it was then that I discovered that although it hadn't aided with sleep, it had controlled my "restless (dancing!) legs syndrome" so the Doc put me back on it, and the 10mg still works fine. My system's so screwed up that if I take 15mg, the Nitrazepam makes me more alert. (?)
This year I've had tremendous muscle wastage ~ have been more house-bound than ever with infections/ viruses ~ and have spent a lot of time in bed where I feel I can get a little more pain relief.
I have good quality pain killers, up to and including 50mg Pethidine, Lyrica and (rare, I know) Co-Proxamol. I suffer from very bad migraines, often 'cluster migraines'.
Strangely (?), I don't have any Rheumatism or any form of Arthritis.
I'd an Emergency Hysterectomy at age 38 (got a lovely Hospital acquired infection and didn't get on well with HRT, tried for 5 years then gave up and felt slightly better!). The Hysterectomy was in April 1988 and by August 1988 was told I'd to stop work immediately for 2 years, when I was diagnosed with ME/Fibro. Blood tests for ME showed high titres of Epstein-Barr (no idea why) and even more strangely Flu A, and I hadn't had flu for probably about a decade!?
I'm throwing everything into the ring here ~ as I really don't know what is relevant.
I'd best stop here, or else this will be a book!
All help / advice gratefully accepted: TIA