Advice Please

[illiterati]

So I've had two private blood tests done through Medichecks, one in May 2023 and one a few days ago.

TSH was 5.59 in the first one, now 4.76. The other stuff was well in the normal range - free T3 5.2/4.6 and free thyroxine 15.7/15.5.

I get B12 injections alternate days, since the start of the year. I was diagnosed in 2009ish as B12 deficient, NHS said I needed injections for life, then stopped them in 2010. I'm not an NHS fan to put it mildly.

I felt a little better for a while this year, but now I feel pretty awful again (although I tend to be like that seasonally). By awful I mean I can maybe play a computer game for an hour or so before I need to lie down or just watch TV or do something similarly non-engaging. If I do shopping or something for an hour it generally wipes me out a couple hours later and I need to lie down & generally sleep for a couple more hours. I don't work or do much of anything else really. It's a battle to do almost anything.

All my hair fell out in early 2023 when I started taking folate & extra B12 tablets (I moved onto injections this year since B12 tablets generally don't work and my hair was still gone - still is). I've always had dry skin. I would say I have most hypothryoidism symptoms - I've gained weight and haven't really lost it despite being careful not to overeat and mostly eating a carnivore diet. Mentally I feel terrible, I won major brainy stuff in the past and did 24 hour challenges no problem. Now I can't maintain concentration for long and I'm highly anxious & irritable.

What would your advice be? Is it likely hypothyroidism? Am I likely to get any help from the NHS in the off-chance I manage to see one of those mythical GPs I keep hearing about?

[TiggerMe Ambassador]

Welcome aboard

I'm guessing you have been reading up about this as you've been a member for a while, were both tests done early am, fasted? Did you also check your thyroid antibodies, Vit D, ferritin also testosterone would be worth looking into?

Your current TSH levels show you are certainly hypothyroid as your symptoms attest, it could well be that if you presented to your GP and requested a 'trial' of levothyroxine you might well be successful, they would insist on doing there own blood tests... it's a bit of a lottery with levels like this I'm afraid but certainly worth a go

[Pandora777]

The loss of your hair must be devastating. I know I have gone through periods of extreme hair loss and I have been in tears because my hair was my best feature. A lot of thyroid disease sufferers lose their hair and end up wearing wigs. I haven’t had to yet because my hair grows back. It isn’t as thick as it was but I am thankful I still have it. Once you get treated it will grow back but in some cases it doesn’t always sadly.

[doityourself]

I won't comment on the thyroid side of your post as there are others here more knowledgeable than me.However, B12 deficient alone or Pernicious Anemia? Big difference. Of course PA leads to a b12 defiency too. You absolutely need b12 injections for PA for life as your body cannot absorb it from food consumed, with a deficiency you probably can improve your symptoms with increased intake of b12 rich foods and oral suppliments. This doesn't help PA suffers. Have you had antibodies test?.

Its really difficult when you have Thyroid issues and PA as symptoms overlap. You could try going back to GPand trying to get more clarity regarding b12 deficiency cause. (yes I know it's a battle which often seems like banging your head against a wall) or you coukd try self injecting or finding a prescribing pharmacist who will gives injections.

Btw did you have b12 levels tested? Results if so? Ask for this if not. If your gp agrees to test you must stop any b12 suppliments for a while before or they will sceuw result s

Sorry not to be more help. I really wish you well.

[SlowDragon Administrator]

B12

Are you diagnosed as having pernicious anaemia?

Or are you vegetarian or vegan

Further testing

very important to test thyroid antibodies, vitamin D and ferritin too

Ideally full iron panel as well

And as a bloke……testosterone

Suggest you see GP and request testing as first step

Always do all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

[illiterati]

I get B12 injections every other day, since the start of the year. My sister's onto that and gets injected as well, her boyfriend does the injections. I get plenty of folate, as well as vitamin D3 & K2 MK-4, vitamin C, magnesium, potassium. I don't have a PA diagnosis. It was basically: NHS says level's low, so we'll inject you every 3 months for life. Oh level's higher now (still low in hindsight, something like 260ish not that the test is any good anyway) and NHS considers that job done. I don't think I was too badly affected back then to be fair. Within a couple of years or so I got myself pretty fit and healthy.

The extra folate & B12 definitely did something for me. The one obvious thing is I used to always look half-asleep, which I don't any more. Although I still feel half asleep, my concentration span lasts a bit longer but is still bad.

The test was done in the morning, not fasted although I hadn't eaten since the previous day. The test covered CRP HS, ferritin, folate, B12 active, vitamin D, TSH, free T3, free thyroxine, thyroglobulin antibodies, thyroid peroxidase antibodies. All were normal range except TSH. It was the same test as in May 2023, where the results were basically the same but with even worse TSH and high ferritin (I was taking supplements with iron in, I stopped them straight after)

[SlowDragon Administrator in reply to illiterati]

The test was done in the morning, not fasted although I hadn't eaten since the previous day.

That’s fine

The test covered CRP HS, ferritin, folate, B12 active, vitamin D, TSH, free T3, free thyroxine, thyroglobulin antibodies, thyroid peroxidase antibodies. All were normal range except TSH

Please add actual results and ranges

Vitamin B complex will keep all B vitamins in balance…..not just folate

[illiterati in reply to SlowDragon]

May 2023 results.

CRP HS 2.34 mg/L [0-3]

FERRITIN 562 ug/L [30-400]

FOLATE-SERUM >45 nmol/L [8.83-60.8]

VITAMIN B12-ACTIVE >150 pmol/L [37.5-188]

VITAMIN D 118 nmol/L [50-250]

TSH 5.59 mIU/L [0.27-4.2]

FREE T3 5.2 pmol/L [3.1-6.8]

FREE THYROXINE 15.7 pmol/L [12-22]

THYROGLOBULIN ANTIBODIES 15 kIU/L [0-115]

THYROID PEROXIDASE ANTIBODIES 12.2 kIU/L [0-34]

.

Dec 2024 results.

CRP HS 1.58 mg/L [0-3]

FERRITIN 409 ug/L [30-518]

FOLATE-SERUM >45.4 nmol/L [7-46.8]

VITAMIN B12-ACTIVE >150 pmol/L [37.5-187.5]

VITAMIN D 148 nmol/L [50-250]

TSH 4.76 mIU/L [0.27-4.2]

FREE T3 4.6 pmol/L [3.1-6.8]

FREE THYROXINE 15.5 pmol/L [12-22]

THYROGLOBULIN ANTIBODIES 17.4 kIU/L [0-115]

THYROID PEROXIDASE ANTIBODIES 14.4 kIU/L [0-34]

.

Some of the ranges have changed for whatever reason.

[serenfach]

Phone your GP and ask for a phone appointment - they generally agree to that and it can be a way of opening the surgery door. Just say your TSH was 5.9 and this is worrying you. If they say where did you have it done, tell them Medichecks and add quickly that you outsourced it like they do. They may not like that you have had this done privately, but then they should offer you a blood test at the surgery. I would not mention that the T4 and T3 are in range, your thyroid is working hard to produce what you have and that wont last forever.

Push the onus on them to get it sorted. That is what they are paid to do. If they still argue, ask for a blood sugar test too- they are VERY keen to do that as they get paid extra. It should not be so hard to get help, but there are ways of pushing the system a bit! Good luck!

[illiterati]

Some more test results, this time from the GP. I suspect the GP will suggest Stage 2 Chronic Kidney Disease - I also heard results like these can be transient and my sister & mother had similar results then were normal next time. I'm not into medical stuff so I don't know.

Serum TSH level 4.02 mu/L [0.38 - 5.35]

Liver function tests

Serum total bilirubin level 12 umol/L [0.0 - 21.0]

Serum alanine aminotransferase level 70 u/L [0.0 - 40.0]; Above high reference limit

Serum alkaline phosphatase level 68 u/L [30.0 - 120.0]

Serum albumin level 45 g/L [30.0 - 50.0]

Serum vitamin B12 level > 1500 ng/L [180.0 - 914.0]; Above high reference limit

Serum ferritin level 269 ug/L [24.0 - 336.0]

Serum folate level > 23.0 ug/L [3.1 - 19.9]; Above high reference limit

Urea and electrolytes

Serum urea level 5.2 mmol/L [2.8 - 7.2]

Serum creatinine level 100 umol/L [59.0 - 104.0]

Serum sodium level 141 mmol/L [133.0 - 146.0]

Serum potassium level 4.8 mmol/L [3.5 - 5.3]

GFR calculated abbreviated MDRD 79 ml/min/1.73m^2

COMMENTS eGFR 60-89: Stage 2 CKD

TATT=Primary prevention=Screening

Full blood count

COMMENTS TATT=Primary prevention=Screening

Total white blood count 9.6 10*9/L [4.0 - 10.0]

Haemoglobin concentration 159 g/L [130.0 - 180.0]

Platelet count - observation 296 10*9/L [150.0 - 450.0]

Mean cell volume 91.3 fL [77.0 - 101.0]

Red blood cell count 5.16 10*12/L [4.5 - 6.0]

Haematocrit 0.472 [0.4 - 0.52]

Mean cell haemoglobin level 30.9 pg [27.0 - 32.0]

Red blood cell distribution width 14.2 % [10.9 - 15.1]

Neutrophil count 4.7 10*9/L [2.0 - 7.0]

Lymphocyte count 3.1 10*9/L [1.0 - 3.0]; Above high reference limit

Monocyte count - observation 1.0 10*9/L [0.2 - 1.0]

Eosinophil count - observation 0.7 10*9/L [0.0 - 0.5]; Above high reference limit

Basophil count 0.1 10*9/L [0.0 - 0.1]

HBA1C

Haemoglobin A1c level - IFCC standardised 42 mmol/mol

Bone profile

Serum alkaline phosphatase level 68 u/L [30.0 - 120.0]

Serum albumin level 45 g/L [30.0 - 50.0]

Serum calcium level 2.44 mmol/L [2.2 - 2.6]

Serum adjusted calcium concentration 2.40 mmol/L [2.2 - 2.6]

Serum inorganic phosphate level 1.18 mmol/L [0.8 - 1.5]

Serum lipid levels

Serum cholesterol level 6.5 mmol/L

Serum HDL cholesterol level 1.17 mmol/L [1.0 - 1.7]

Serum triglyceride levels 1.19 mmol/L

Serum LDL cholesterol level 4.8 mmol/L [0.0 - 4.5]; Above high reference limit

Serum cholesterol/HDL ratio 5.6

Serum non high density lipoprotein cholesterol level 5.33 mmol/L