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?

yes ask for thyroid treatment
the fact that your TSH has risen should be reason enough

If that TSH is out of range, go back and ask for TPO and thyroglobulin antibodies to be tested to see if you have auto-immune thyroid disease.
Re-testing TSH in three months is a bit cautious when you can see a steady rise, but fairly common. Make sure you get that test and a further out of range TSH plus positive antibodies will cement your need for treatment.

What's happening about your B12? How low was it?

Folic acid is not a treatment for low B12. If it's that low your GP should be checking for pernicious anaemia with a view to giving injections.

If that 13 is a ferritin result, it's dire and will account for all sorts of symptoms. If it's serum iron, I'd need to see the reference range before commenting.

That's subclinical hypothyroidism. In my area tsh should be under 4.2. So anything over that with clear symptoms warrants a six month trial of treatment to get the tsh down.

I feel utterly shit if my tsh is over 1. So yes ask for treatment to see if it helps.

What was your B12 level? If that's low and you have symptoms then that should also be treated.

Did they do your vitamin D? That tends to go hand in hand with the above two.

Thanks for your replies. I really don't understand all the different tests and levels for thyroid, so I am worried the doctor will fob me off. The 13 is iron levels, not ferritin, so according to that I'm not anaemic, but it was anaemia-type fatigue that prompted me to make an appointment in the first place.

I haven't got the reading for B12, I was just told it was low. I've been prescribed B12 tablets (wondering why not injections), and not folic acid. My folate levels are 3.3. I haven't got any of the reference ranges for these tests, only the ones from a few years ago. I will ask again for a print out when I go in tomorrow so that I've got the reference ranges. They possibly did Vit D, but I haven't got the whole set of results yet.

My aunt and a few cousins have thyroid issues, my aunt is definitely on medication, but I'm not sure about the cousins. I don't know what their levels are though. My mum's half brother had surgery on his thyroid, but again, I don't know any more than that. Timeistight would you mind explaining the two further tests I should request of the TSH is out of range please?

The brain fog is terrible! I've lost count how many times I had to scroll back to read your posts - and I didn't even type your names in my reply, sorry, I'd have been here all night if I had! It's not helping me feel confident about articulating my feelings tomorrow. I should write a list so I don't forget anything.

Ive had a few wines this eve but I'll be back tomorrow to pick up on the points and levels in your op.
Have a look at stop the thyroid madness ( STTM) and thyroid uk for now.
Safe to say, tsh is an outdated ( not that gp's know this!) test. They used to treat on symptoms alone. Have a look at recommended blood tests from the two sites I've mentioned above and get making a list for your GP but I'll suggest them tomorrow too. Also know that b12 , vitamin d and iron deficiencies tend to go had in hand with hyperthyroidism...especially the autoimmune variant called hashimoto's.
Anyway, that's me for now! Back tomorrow

I have all these symptoms.....gp diagnosed pernicious anaemia.
I was prescribed folic acid and b12 injections.

Thanks RubberJohnny I'll look at those.

Maverick66 how was your pernicious anaemia diagnosed?

You need to go back and ask why you haven't been given B12 injections if your B12 is low and ask if they have checked for anti-intrinsic factor antibodies. These are the NICE guidelines for B12 treatment cks.nice.org.uk/anaemia-b12-and-folate-deficiency#!scenario

"How should I treat a person with vitamin B12 deficiency anaemia?
For people with no neurological involvement:
Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days for 2 weeks."
Not give them tablets and send them away. They should be investigating the cause of the deficiency (do you have coeliac disease, do you take a ppi medication regularly, are you vegan, do you have pernicious anaemia..) as the reason behind it may affect long term treatment.
Good luck on the thyroid thing, I have steadily increasing tsh levels too (up to 3.5 now) and am convinced I have a thyroid issue but as my levels are still in range, my gp won't do anything.

Dolce.
GP did a raft of blood tests when I presented with the symptoms.
Found I was lacking in something (sorry can't remember medical term) which helps my body process b12.
He diagnosed pernicious anaemia and started me immediately on injections.
I had to have them once a week for three weeks and now I have them every 12 weeks.
They have made a big difference but As time goes on I find I'm getting less benefit from them . I feel instead of every 12 weeks I would need them every 8 weeks. The difference to my energy levels is unbelievable.

P.s this coincided with onset of menopause.

Maverick...that thing you were lacking is intrinsic factor.

OP your TSH is borderline but your ferritin level is low and may be causing symptoms.

Thank you rubber

Thanks Maverick. Sounds like the B12 injections made a big difference initially.

Just had a look through the NICE guidelines but I can only see info about B12 injections, nothing about tablets. When she tells me to take B12 tablets, I should ask why injections aren't being recommended, is that right? And ask if anti-intrinsic factor has been tested as this could affect absorption of oral B12 - have I understood that correctly?

Yikes I haven't got the ferritin results yet, so I have no idea if they are low or not.

Hmmm, I'm 40, so I guess menopause isn't out of the question. My peeps have always been irregular but I got the Mirena three years ago and since then periods have been much lighter, although thinking about it, I haven't had a period for months

Don't know if this will post as no signal in the surgery.

TSH 4.9 (0.27 - 4.2)
Serum free T4 11.5 (12-22)
B12 330
Folate 3.3 (4.6 - 18.7)

Waiting to see doctor now...

That is straight up primary hypothyroidism. Your TSH is above the reference range and your FT4 is below, so you should be put on treatment now, starting on at least 50mcgs of Levothyroxine and re-testing every six weeks and increasing the dose as appropriate until TSH is around 1 and FT4 is up at the top end of the reference range, say 20 or 21. You need to tackle the low folate, which you can do by diet or by taking a decent B complex supplement. Your B12 is low but not v low, so you can raise that with sub lingual lozenges.

Feel free to come back and ask more questions.

Thanks for your message, Timsistight, I didn't see it before I went in to see the doctor.

She spent a long time listening to my very long list of symptoms, looked at blogs and the only thing she was concerned about was the thyroid ones. She hasn't offered any treatment, but she has ordered a repeat blood test for weeks from my last one, and this time will include, I think I'm remembering this right, thyroid protein (or something that will show if it is an auto immune disease), and Vitamin D. She told me to make a double appointment with her to discuss the next lot of results and said that she's inclined to treat the thyroid once she's established that it's not just a blip in the TSH levels. I feel that she listened to me, but I'm disappointed that treatment isn't forthcoming. She didn't say anything about the folic acid that I've been prescribed (but yet to see a prescription for!) - I got the B12 tablets wrong, apparently B12 was within the normal range and doesn't need treatment.

So many numbers, so much confusion - the brain fog really isn't helping when I'm trying to understand it all.

Blogs? Bloods!

It sounds as if you’re nearly there. The test to see if it’s auto-immune will be the antibody test I mentioned earlier. I’d treat you now, but then I’m a historian albeit a hypothyroid one, not a doctor.

Your B12 is in range, but pitifully low. Not low enough to be pernicious anaemia I wouldn’t have thought, but probably a factor of your failing thyroid. One of these a day will sort that out fairly quickly.

www.amazon.co.uk/Jarrow-Methylcobalamin-B12-1000mcg-Lozenges/dp/B002FJW3ZY/ref=sr_1_1_a_it?keywords=jarrows+methyl+b12&dpID=41noiw33HiL&preST=SY300_QL70&tag=mumsnetforum-21&ie=UTF8&qid=1524223650&dpSrc=srch&sr=8-1

If it's not auto immune, does that mean they won't treat it, and will it sort itself out?

Sounds awful, but I'm keeping my fingers crossed for any sort of result that warrants treatment because I just can't drag myself through life like this any more.

Thanks for the link to the tablets, I'll get some of those. Will they be ok to take with folic acid? I'm wondering if I could do with a decent vitamin supplement to give me a bit of a boost as well?

Auto-immune or not, the treatment is the same. It’s a bit of a red herring from that point of view. However, 90% of hypothyroidism is auto-immune in origin and once you have one auto-immune condition you are statistically more likely to pick up others and there’s a great range to choose from.

You need treating now to be honest, but if your GP is being cautious and making you wait a few more weeks, then so be it. You’re nearly there.

An off the shelf multi-vitamin is not likely to be much help I’m afraid. You need to look at what needs supplementing and at high quality individual supplements.

Hi, agree you need thyroxine treatment; I believe that with borderline subclinical results if you're symptomatic they may do s trial.

Incidentally, you do need iron to help your thyroid function (I've been very reliably informed by a researcher in the area) and if your ferritin was 13 (?) that's not enough. "Normal" is over 70. Most don't treat though till very low but I do notice a big difference if it's higher.

Tsh 4.9 I do think is almost subclinical; do you have the reference ranges for your test? I'm sure nice guidelines say trial thyroxine if symptomatic.

It makes no difference what the origin is, it needs treating.

The other autoimmune condition they might test is coeliacs which can exist 'silently' and co exist with autoimmune hypothyroidism.

This book is great: www.amazon.co.uk/Thyroid-Disorders-Understanding-Family-Doctor/dp/1903474191 (lists all these conditions)

And I do recommend the British thyroid foundation as an excellent source of support and info.

Thanks Ekphrasis and Timeistight.

I've just checked the printout for the ferritin levels, and I can't find a figure for it at all. Is that something that isn't routinely tested as part of a full blood count test? I need to get another blood test in a couple of weeks, so can I ask the nurse to check for that as well, or does that need to be tested by a doctor? I already need to add a cholesterol test to the samples, as I didn't get it done as part of my 'Over 40 MOT' because I knew that I would need my bloods done again a couple of weeks after that and I am a big wimp with blood tests so I thought it would be better to do it all in one go. The Haemoglobin estimation is 134g/L (115-165), so I think that's where I got the 13 from.

I've got the reference ranges for the other tests:

Serum TSH 4.9 (0.27 - 4.2) "High"
Serum free T4 11.5 (12-22) "Low"
B12 330 (180 - 700)
Serum Folate 3.3 (4.6 - 18.7) "Low"

I will look up the NICE guidelines and have a read of them so that I can back up my argument for a trial of thyroxine - it's great to know where to go to find this information, so thank you.

I don't know anything about coeliac, but I will have a read about that as well. All I know is that it's tummy problems, but I could be confusing that with Chron's

Thank you for the book recommendation, I'll go and have a look at that. I've got a lot of reading to do!!!

I feel totally wiped out. On Wednesday, I went to bed at 8pm and slept right through. Woke up with a migraine and called in sick to work on Thursday, then went back to bed and slept on and off for most of the day, before having an early night on Thursday night. I managed to drag myself to the supermarket on Friday to do the shopping, but that was about all I did even though the house was desperate for a good tidy up.

I went for a long walk with family on Saturday (10k steps approx) which left me feeling really tired and with bad pain in my hips. I slept badly that night thanks to the thunderstorm and DS being sick and then slept for most of Sunday morning. I just pottered in the garden yesterday afternoon, pulling up weeds, but found it really hard work. It was as much as I could do to change the sheets on our bed last night before I fell into it. It just isn't normal to feel this tired after doing so little.

I am keeping a record of my activity and how I've been feeling, and will also add what I've been eating as well. Then when I see the doctor in the middle of May I will be able to show her and hopefully she will get a better picture of weight gain not being down to a poor diet, and how tired I get after different activities. Hopefully that, together with the blood test results, will be enough to convince her to trial thyroxine. I really hate taking any kind of drugs, only take paracetamol when DH force feeds them to me, but I have reached the point where I just cannot carry on as I am and recognise that I really need to get to the root of the problem and start to treat it. I just want my energy back and to have a clear head so that I can start enjoying life again

I guess you're right, Timeistight, a few more weeks in the grand scheme of things won't make a lot of difference. I'm keeping an eye on my doctor's appointments though to see if any are released a bit sooner than the one I've got booked and will try to bring it forward a bit. I've found a few old threads that I've found particularly useful, so I will update in the hope that my experiences might help others.

for everyone who has commented and given suggestions, I really appreciate it.

Ask to be checked for coeliac disease also. Always worth ruling out if nothing else.