High TSH and low B12

[Dolceandgabbana14]

After months and months of feeling utterly exhausted, with brain fog, forgetfulness, palpitations, shortness of breath when I walk and the onset of debilitating headaches which are only improved by going to bed, I made an appointment to see my GP. I've always been very slim, around 8.5 stone, but the last couple of years I've really had to watch what I eat. I hit 9st4 and lost almost a stone with Slimming World at the beginning of 2017, but since Christmas I have put all that and more back on, and in the heaviest I've ever been now (9st 8lb). To some people that might be nothing, but I've put on 10% off my body weight in the space of three months.

I ended up in tears to the GP explaining my symptoms, saying that I seldom visit the surgery and made the appointment because I feel that I've hit absolute rock bottom. He ordered a blood test.

I have some of the results from the receptionist. My TSH is 4.9 (for comparison, results from 2015 were 2.3 and 2014 were 2.24), and the doctor put a note on to get the levels retested in three months. My folate levels are 3.3 (6.8 in 2015) and a prescription has been left for Vitamin B12 tablets once a day. I had expected my iron levels to be dreadful due to the exhaustion, but they came back as 13.

When I had blood tests previously, I felt terrible. But comparing the figures with the ones I got from the receptionist today, I can see how much worse they are and this would explain why I am barely functioning.

I rarely take time off work, but today I have given in and called in sick. I went to bed at 8pm last night, slept through till 6.30am and woke up feeling shaky and panicky (not unusual) with an outrageous headache that is still hanging around now. I have been in bed all day, asleep for most of it, and can't wait to go to sleep again soon. DH has looked after the DC for me after I told him that I just can't keep going any more and that he will have to take over while I put myself first.

I've got an appointment with another GP tomorrow morning to discuss the results of the blood tests. Is there any point in asking for thyroid treatment, given the difference in my levels over time, rather than just looking at the standard ranges and saying that they are within the range or borderline? Will the B12 tablets alone make me feel better, or have I got to carry on like this for another three months? The thought of that makes me shudder, I don't think I can drag myself through life like this for that amount of time. Any advice from those who have been there and come out the other side feeling full of energy and 'well' again?

You can compare your symptoms with these
www.coeliac.org.uk/coeliac-disease/about-coeliac-disease-and-dermatitis-herpetiformis/symptoms/

You're very almost subclinically hypothyroid - technically your tsh is in that arena while t4 is just in the band.

If you were to be attempting ttc, you absolutely would be put on thyroxine as it must be 2.5 or below in the first trimester.

cks.nice.org.uk/hypothyroidism#!scenario:1

• • Many people with SCH do not need treatment, but if a decision is made to treat, prescribe levothyroxine (LT4). ◦ Do not prescribe combination therapy (LT4 and LT3) in primary care. ◦ Aim (in most people) to reach a stable TSH level in the lower half of the reference range (0.4–2.5 mU/L).*

It does sound like lots is going on. What tummy problems do you have?

Ferritin isn't always tested to be fair. However it might indicate any absorption issues and you can become anaemic from low thyroid hormones. (Something to do with how the bone marrow metabolates when hypo)

I thought muy T4 is just outside the normal range, or is it a different band you're referring to Ekphrasis?

What is subclinical (as opposed to 'normal') hypothyroidism?

Sorry for the questions, I'm learning as I go along.

Thanks for the links for coeliac. I don't tick many of those boxes, only really the general ones like tiredness.

Busy day coming up, worn out just thinking about it!

Sorry yes tired pregnancy brain keeps reversing things!

Subclinical means a grey area between what they class as normal and full blown hypothyroidism (over tsh 10) but many (probably most) people do exhibit symptoms. There's a lot of controversy about that 4.2-10 area. It is however in the guidelines that if symptomatic t4 can be trialled.

In all honesty you're describing how I was when first diagnosed. Constantly in bed, weak etc. I tend to loose weight as I loose my appetite, forget to eat and feel anxious about not functioning. Most weight gain is water retention, you do loose muscle mass over time, especially thighs and upper arms etc which is why it gets increasingly difficult to do things like change beds, hoover etc.

Are you constipated? That's always a big indicator for me which can signal the need for a dose change.

@Dolceandgabbana14 - tiredness is often the only symptom but you also have low B12, headaches and brain fog - the biggest indicator of Coeliac is low iron and your Ferritin is low. It’s a simple blood test, worth it to rule it out at least.

My mistake; subclinical would be a raised tsh up to 10 with a t4 within the normal range. However your t4 is borderline outside this.

The gp is being hesitant as thyroids can have a wobble and recorrect but in all honesty family history (you must emphasise this with gp) and your slowly progressing tsh is pointing towards hypothyroidism.

It sounds like they will test antibodies next time - if these are absent yes they should really treat based on the symptoms but you'd need a gp who understands that symptoms are half the diagnosis not just looking at numbers.

It tends to be best to always get tests in the morning (early as possible) or at least at the same time of day. Tsh can be a tad higher in the morning eg around 9am.

When is your next test?

Sayhellotothelittlefella I will ask about this when I go back to the GP.

Ekphrasis, that makes sense - the T4 is only 0.5 out of range though. On the last results, there was a note that the doctor put on that said "Borderline hypothroidism. Suggest repeat in three months together with thyroid antibodies as these predict progression to overt hypothyroidism." It sounds like that's the test that you're talking about. If the T4 is below the range, does that mean that they won't treat it without a bit of a fight? Honestly, I am so desperate to feel better, that I'm pinning all my hopes on some treatment.

Loads of paperwork to get through this morning, and my plans to catch up have been thwarted by DS being off school this morning. Going to get on for as long as I can whilst he's watching CBeebies!

If t4 is below, plus with tsh above the range they should be treating. The issue (for a gp weighing up test results and symptoms) is that as you say it's only 0.5 under.

In 3 months it could well be worse eg tsh 7 and t4 9, in which case they'll treat. If there's antibodies they'll definitely treat as it will degrade - I wonder if it's worth asking for that particular antibody test now as it might help swing treatment now.

You would not be unreasonable to see if you could request treatment now - they're waiting to see if your thyroid recovers a bit, which they can do, but in your case the family history and your symptoms suggest you're heading into hypothyroidism / actually have it. You could try printing off the nice guidelines, reading them carefully and highlighting the key parts to back you up.

Your difficulties functioning and going to work merit a chat with the gp sooner rather than later and maybe discussions with your work to explain what's going on - this is treatable but obviously not quickly unless your gp decides to.

You are entitled to ask for a referral to an endo, but the waiting list could be as long and really this is primary care stuff. You could ask them to contact an endo for advice esp regarding your symptoms - the b12 might begin to help in a few weeks but we don't know which is the issue really.

It's extremely frustrating. Anything thyroid can sometimes take a long time to settle, diagnose, tweak medication for, retest etc. I do feel for you.

Thank you, that's so helpful . I feel like I'm starting to get a better understanding of it all now! I had the initial blood test on 6th April, with the suggestion to retest after three months. However, when I went to discuss those results with the doctor, she was sympathetic and could see that I'm struggling, and said that the soonest they could repeat the tests was after a month. So I've booked a blood test appointment for 8th May. The doctor told me to make a double appointment when I go back to see her next time to discuss the results (I am the cause of a massive delay for the other patients last week ) and the earliest I could get after the blood test was 21st May. I can call to get a 'week ahead' appointment, so a few days before I have the blood test I will call to see if I can book a 'week ahead double' appointment - not going to hold my breath, but at least I know that I already have an appointment even if it's a way off. We're only a month away now, so I'll hold on and see what the antibodies are doing, and it'll be interesting to get another reading to compare what's happening over this few weeks.

Ah that's great, gp does sound supportive. You might find the gp rings you to discuss results - I would definitely ring a few days afterward the test (sometimes even back after a day or two) and ask if you can find out the results (you have a right to know) and then post back here. It's possible you might be issued a script for thyroxine before your double appt.

The double appt will be useful if you're still hovering around that borderline stage. This is the point where I would ask if medication could be trialled and point out nice guidelines and your physical symptoms. Many women are fobbed off with "its depression" however low mood due to the brain fog is a symptom (and v low b12 creates a lot of mh issues) but your results do show clear thyroid dysfunction abeight borderline.

There's also a sort of delay in symptoms by the way. So if I stopped my thyroxine today it would take 2-3 weeks for real symptoms to show. (Though I think I'd notice in about 10 days I know the feeling so well) It can take about 2 - 3 weeks for symptoms to start to improve when starting thyroxine, longer if you're then testing and adjusting doses again.

Not a medic but my focus would be on your folate levels. Folate deficiency cal lead to anaemia with the same symptoms as low b12 or iron. Have you been told to take folic acid? Also did you have you haemoglobin, mcv and mch levels tested (red blood cells concentration)?

The high tsh shows your body is signalling to output t4, but low t4 means it can't. Did they test antibodies? If its autoimmune (hashimotos) it might be easier to get treatment now. Your results are worse than mine were when i started treatment. Altough my HB was fine, my ferritin, folate and vit D were on the floor. I needed to supplement them too.
I'd ask to refered to an endocrinologist as they can test ft3 too.

Just popping back to update. I had a second blood test at the beginning of last week and the doctor rang me with the results on Friday evening. I have an appointment with the GP I saw last time booked for tomorrow morning to discuss the results in more detail, so any light that could be shed on these results would be appreciated.

Unfortunately, the Thyroid Peroxidase Antibodies test result wasn't back, so I don't know what that is. Maybe it will be back by tomorrow morning, but I don't know what the numbers should be looking like - any suggestions welcome.

The doctor who called on Friday was somewhat confused by my results and said that there was a big variation between those done a month ago and the most recent ones. I did say that I'd read that they should be done at the same time of day, and ideally early in the morning, but the only chance I had to get to the blood clinic was mid afternoon. He said that it wouldn't account for the difference as it was so large. Consequently, he thinks I should get the levels tested again in 3-4 weeks time.

Anyway, the results were:
TSH - 3.4 (was 4.9) Range = 0.27 - 4.2
T4 - was 11.5, Range = 12-22 (not tested this time, annoyingly)
Thyroid Peroxidase Antibodies - Pending
Vitamin D doctor described as "a little low" and when pushed, he said it was 44.3, and that in the 'old days', below 50 was 'abnormal' and treated, so he will give me a prescription for Vitamin D.
Cholesterol was also checked (as part of over 40s assessment), and was normal.

The GP didn't know why there was such a difference in the two TSH levels, and said possibly one of the results could have been misread, which is why he wants to repeat them.

I am the first to admit that I put myself under pressure to be superwoman and can't let go of things easily. However, the last month I have really tried to relax more, hand over to DH, give in and have a really early night when I get tired and just generally tried as much as I could to take things easy when I can. I've felt a bit more energetic (well, that's probably not the right word, but I've definitely felt a bit more motivated to do a bit more in the last week). I'm still sleeping badly, have very dense brain fog which is becoming more noticeable and I am piling on weight, especially around my stomach and upper arms. I did a pregnancy test because my tummy looks like a 'bump' and the exhaustion was so similar to how I felt in very early pregnancy, but it was negative (and with such a low libido, it really would have been a miracle if it had been positive)! Anyone got any ideas as to where I go from here, or any possible thoughts that I could ask the doctor about tomorrow?

The GP didn't know why there was such a difference in the two TSH levels
Really? TSH levels do fluctuate, that is normal, the issue is when they fluctuate from normal to out of range. In your case, they fluctuate within the normal range. Mine do to, even outside of the range once, but then came back in range at the next test.

What you need to discuss is your folate levels. If the test was ng/ml, they are probably in range, but low, if nmol/L, then they are too low. You need to know what your B12 levels were, if under 200, definitely too low. Ferritin level of 13 is towards the low end of the scale.

All these would explain a diagnosis of anemia, which is why you need to know your haemoglobin levels and mcv/mch too.

I agree with above posters, these could be an indication of coeliac disease. Ask for a print out of your results and come back here to let us know how your appointment went.

Thanks Swing. The initial results I posted were from memory and were actually incorrect - blame the poor memory. This is a print out of the results from April. The only additional numbers I have are in my last post. Sorry I'm not sure how to rotate the picture

Sounds very similar to me. My TSH was 1.3 last June, 2.3 in February and 5.95 a couple of weeks ago. Folate in the 2s, Vit D under 20. I feel absolutely shocking. Seeing my GP on Friday.

Unfortunately your TSH level is high enough to make you feel awful but not high enough for a hypothyroid diagnosis. If you get a similar result in 3 months they may be willing to treat it as “subclinical hypothyroidism”, which is what I’m hoping for as I’m desperate.

Should have added, I've been taking folic acid tablets since April.

I’ve been told that standard folic acid tablets aren’t sufficient for a folate deficiency and you need methylfolate. I haven’t got hold of any yet, just waiting to see my doctor but folate can be improved through diet.

Tsh is slightly higher in the morning, though there could be natural fluctuations on top in early hypothyroidism, esp if have a slight goitre.

Try to always book bloods for then - I now get tests between 9:15-9:45 (to fit with school run ). You do need to be aware of this though; when my tsh is 0.5 with morning tests I need to be careful I'm not inadvertently on too much thyroxine. Trial and error has led me to around 0.8 - 1 being my best morning level.

Maybe ask if you should / could take folate rather than folic acid too - some people have a gene called the MTHFR gene which means they struggle with synthetic folic acid. It makes no difference really to take folate to be fair, gene or no gene.

In a rush will read more closely later.

Thank you Sinkgirl and Ekphrasis.

I saw a very understanding GP this morning, and I felt she really listened. She said my thyroid peroxidase antibodies level was

She sounds good. Low b12 can cause neurological issues / mental health issues (as can low thyroid). And as can low vit d. Hopefully when levels are boosted you will feel better. When they are, id ask for another thyroid test to be on the safe side.

OP, you have very low folate. This alone will give you all the symptoms you are complaining of. Google 'low folate symptoms' and you will see. Your B12 is not great either. What your GP should do is not refer you to a neurologist at this stage but test your haemoglobin and other tests that are normally carried out when a patient shows all the signs of anemia.

You've started on folic acid, so you should have been tested again. If still low, it could be the evidence of poor absorption and the reasons for it would then need to be investigated.

I have got some Centrum 50+ Women's tablets in my Amazon basket, and having compared them to the normal Centrum and a couple of other brands, they seem to have the highest concentration of folic acid, Vitamin D, iron and B12. Hopefully they will set me on the road to feeling full of energy very soon!

I agree with both of you that I should get my thyroid and vitamin levels retested in a couple of months to see what's going on. As you said, Swingofthings, the folic acid should make a difference, but if there is no or very little change in the levels, then I should start to investigate why I'm not absorbing it properly. I completely get what you're saying about the neurologist referral as well, but there is a family history of a neurological problem and the headaches, with the forgetfulness and word-finding difficulties, the doctor said she would like to double check everything is ok so that we can rule out any neurological causes for these things.