I'm only 22 and in my second year at university and struggling so much and feel it's hard to get people (GP and families) to understand the extent to how bad I feel (lethargic/tired, mood swings, zoned out, poor memory, aching neck/shoulders).
I'd appreciate some opinions of the experience of others in being diagnosed as Hypothyroid... I'll explain my poor health journey.
In August last year I went to the doctors as prior to this for approx 2 years I'd been feeling (no other way to put it) just exhausted all of the time. Following blood tests, I was Vitamin B12 deficient at 88ng/L, Folate was 3.0ug/L and I had Thyroid Antibodies 461.7 U/mL. My Thyroid Function Test was all in range TSH 2.19mU/L (July) and 1.86mU/L (August), so was told they would monitor my thyroid yearly as there's a chance I could become Hypothyroid but nothing to do at the moment.
My B12 did increase to 267ng/L after 4 weeks of taking oral Cynacobalamin and my Folate levels increased after taking Folic Acid. I was denied Intramuscular Injections of B12 as the Intrinsic Factor test came back as Negative so was told it wasn't an absorbency issue. (Probably worth mentioning I'm not a vegan/vegetarian and my diet is good).
Since then I've been taking B12 supplements I bought off Amazon and have started to feel worse again. I went yesterday to have my bloods redone and this is what has come up.
TSH 3.90 mU/L (ABNORMAL)
Serum Free T4 10.4pmol/L (NORMAL)
Eosinophil (White Blood Cells) (ABNORMAL)
Ferritin 34ug/L (NORMAL)
Serum B12 178ng/L (ABNORMAL)
Serum Folate 3.7ug/L (ABNORMAL)
As you can see, my B12 and folate have fallen again. My TSH has now risen to just above the reference range (0.57 - 3.6). I also have the presence of disease-fighting white blood cells.
My question is..... is my TSH high enough to ask for medication? As I never got a reason for my vitamin b12 deficiency, I presume my thyroid is the answer and has caused absorbancy issues by causing low stomach acid.
I'm expecting a phone call from the GP tomorrow to discuss my results, I presume I'll be offered B12 injections finally, but am I "ill" enough thyroid wise to require medication?
Any advice would be so greatly appreciated,
Thank you!!!!!
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Your high antibodies confirm you have autoimmune thyroid disease (Hashimoto's) .
The very low vitamin levels often result in Thyroid blood tests appearing more "normal" than they would be if vitamin levels were good
So it's a bit chicken and egg....your vitamin levels are very low because your gut is affected by having Hashimoto's
Your Thyroid tests appear "fine" because vitamin levels are so poor
Hashimoto's affects our ability to absorb nutrients.
Just because you tested negative for Pernicious Anaemia, doesn't mean you shouldn't have B12 injections. There seems to be a move to trying to get people onto B12 tablets instead
You might want to ask advice on PAS healthunlocked- they are B12 experts
If your going to take daily B12 supplements it needs to good quality ones.
Jarrow sublingual lozenges 5000mcg - available on Amazon are most recommended on here
B12 is better absorbed in the mouth than the gut
"Better You" also do a B12 mouth spray - apricot flavour
As well for, low folate Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be more beneficial than folic acid.
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). Or Jarrow B-right
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Ask GP to test vitamin D and ferritin. Plus you need coeliac blood test
Also ask for thyroid retesting Including FT4 and FT3
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first, just to rule it out. Assuming test is negative you can then try strictly gluten free immediately. But if test is positive, you will need to remain on high gluten diet until endoscopy.
It's difficult to be assertive at best of times, difficult on the phone too. But it's your health and getting correct treatment for B12 deficiency is essential.
Just as a negative intrinsic factor test doesn’t mean it can’t be pernicious anaemia, a negative coeliac year doesn’t mean it can’t be coeliac or non-coeliac gluten sensitivity.
Your doctor isn’t thinking very much - just reacting to results. You clearly do have a problem which he/she is choosing to overlook.
Thank you for your reply, yeah I’m aware of the unreliability of it however don’t feel like the GPs understand any of this at all, I’ll have to be more forceful I think.
I'm just reiterating what's already been said, but it does look like you are hypo, unfortunately you're not hypo enough for them to consider medication. However you could always plead with your doctor to give you a trial of thyroxine, citing that you just need to get through the next few months of uni, and you'll have to drop out if you have to stay in your current situation?
What are your B12 supplements like? I suspected a B12 deficiency and started taking tablets from Holland and Barretts. I later went to see a nutritionist, and we established I have low stomach acid (which is very common with hashi's), and that my body would be extracting very little B12 from the tablets due to the binders being used. A B12 spray or sublingual tablet is the best form to take.
I’ll try asking for a trial and see how far I get, just feel like everything’s declining and the root cause is the thyroid! Initially I tried the ones available on the NHS which I took twice a day. B12 went from 88 to 267 after 4 weeks but plummeted back down now. They were 50mcg and the ones I bought from Amazon were 1000mcg so thought they’d be better, turns out they aren’t so who knows what’s going on! Thank you very much for your reply
B12 supplements can also sit residually in the blood stream for a while, so if your blood test was within a month of your last B12 dose, the result will have been artificially high (i.e. that result isn't actually the amount that was in your body),
I see that you saw a doctor in August so I'm presuming that was your home town GP? So are the recent comments from the same doctor or have to gone to student health?
Many years ago I worked with medical students and I was concerned a female student was always handing her work in but late so she wasn't getting the marks she deserved so I thought she is either copying it from someone else though she didn't look the type or something was wrong. The problem was solved after a visit to student health though her excuse was too tired to work to a deadline so my ears had pricked up and I wondered.
Came back with a confirmed goitre and medication! With 180 students in a year you don't see many close up but looking back on the photograph taken on admission plus now knowing the issue it was there though not very pronounced. Student Health if you haven't seen them with be more switched on as I'm sure it is something they will have seen many times before with young people and an increased work load so not coping well due to Thyroid issues.
GP in my hometown, I commute to uni. First time was a nurse practitioner who was useless, then I went to a male doctor who said if tests were fine must be Chronic Fatigue Syndrome. So I just put it out of my mind for 6 months and carried on taking B12 supplements. This time I went back to a female GP, still waiting for the phone call just hoping it gets sorted this time. I’ll try see what services are available at university, thank you!
Just adding a bit to what others have said. Mars/Marz is very helpful about PAS, vit B12 and probably worth messaging. As for B12 I am vegan so supplemented with Jarrows methylcobalamin as recommended by Marz and have ended up too high and have been able to reduce the amount, so she's right about their supplements being good.
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