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?
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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
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.
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)
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
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!
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]
Not 'easier' at all. Nigh on impossible. The NHS is absolutely useless. For example just for that one simple blood test they didn't bother to tell me my blood test was *in a different building altogether* and I had to rush over (lucky I drove) to get there in time. Later I get letters telling me to make a follow-up appointment. I email them because as usual you can't do sod all on the app/systmonline. Then they give me an appointment on a Saturday to a place that is closed and just ignore all my follow-up emails asking why they gave me a phantom appointment.
They have also made up a previous appointment (blood test) on my record that I'd apparently walked out from at another useless general surgery I switched from because their negligence nearly killed my sister, and this 'blood test' was from May 2023. I'd registered away from that dump around covid time, so it's nonsense. I did 'walk out' of a blood test from there many, many years ago because when I turned up for my appointment the nurse had buggered off home for a nice early lunch. So what else was I going t do.
It's an absolute farce every time for the most basic of things. I could go on for hours about the NHS. I remember going in with my dad to an outpatient appointment where the guy advised him to eat fruit & veg to address his B12 deficiency. So what choice do I have? There's no chance they put me on levo with a TSH of 4.02 now anyway.
Plenty of private endocrinologists who could prescribe Levo initially
See how you get on with levothyroxine, increasing slowly up in dose over 6-12 months
You might eventually need addition of small dose of T3 or possibly NDT
But early on it’s much easier to start on levothyroxine
Important to maintain good vitamin levels too
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
Nothing I've read suggests Levo is easier to start on than NDT, the only variable is the NDT can be inconsistent. NDT appears to be a more effective otherwise, generally speaking.
Going private means I pay for the appointments and still pay for the medication. How is that 'cheaper' short term?
Any replacement thyroid hormone that contains T3 will rapidly lower TSH, usually to be extremely low or totally suppressed. This will shut your own thyroid hormone output right down
It’s important to be on high enough replacement dose before this happens
On levothyroxine (Ft4 storage hormone ) TSH is much less likely to drop as rapidly, allowing a more gentle transition from your own thyroid output to full external replacement
ESSENTIAL to maintain optimal vitamin levels at all times
Once on full replacement dose Levo and optimal vitamin levels…..if at this point Ft3 remains low when Ft4 is high…..then is time to consider alternative options
About 20% of people on just levothyroxine, might eventually need addition of small dose of T3 alongside levothyroxine……or addition of NDT ….
I'd have to get the highest dose, the most expensive brand and the most expensive site to get near to £200/month.
I understand that T3 will suppress TSH (my levels are high anyway), but all the literature suggests starting NDT at a low dose and build up. So what you're suggesting would contradict that.
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