Hi all, new here 👋December 2022 I was feeling pretty rubbish, really low mood, spaced out and just generally unwell. I went to my GP and my bloods came back borderline underactive. In February I found out I was pregnant, during routine bloods I had a phonecall from the hospital saying I needed to start Levothryroxine 75mcg. I was reffered to an endocrinology doctor, who said I had antibodies and would likely be on the medication for life. Fast forward a few months and I gave birth to my baby girl via C-section. I was told to stop taking my thyroxine by the medical team at the hospital and would have a blood test in about 6weeks. I had these done by my GP and told I didn't need to be on thyroxine anymore.
The past few months I have been increasingly tired (the baby sleeps 11hrs a night so it's not that), brain fog, stomach issues (left sided ache, constipation, bloating, nausea). I'm not sure if this is related to my thyroid? Should I be rested again? People say they're surprised I don't need it anymore considering the antibodies. The only medication I take is the mini pill. I get very confused reading about thyroid issues but I'm thinking how rubbish I'm feeling n these other pains could they all be linked!
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Luna5289
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OK, so the first thing you need to do is to get hold of your blood test results, with the ranges. If you are in the UK (and you don't give us any info about yourself, so I'm just guessing) it is your legal right to have a print-out. Ask at reception. They cannot say no.
Then, post the results and ranges on here, and let's have a look.
The main problem we face is that doctors know next to nothing about thyroid. Could be that your GP saw that your results were in-range and concluded - wrongly - that you were 'cured'. That does happen far too often! Or, it could be that you were have a Hashi's 'hyper' swing at the time and your results looked good. Doctors don't understand that that is only temporary.
But, whatever the reason, you can't advance any further without knowing - and understanding - your blood tests results. You need to know exactly what was tested and exactly what the results were before you can tackle your GP.
Your symptoms do sound as if they could be related to your thyroid, but the problem with hypo symptoms is that they're non-specific, and could all be due to other things. But, time will tell. First steps first.
I see. Well, I would strongly query that because that TSH is much too high. The TSH of someone with no thyroid problems is around 1. And you not only have a high TSH, but you also have high antibodies, so things are going to get worse, not better.
Your GP should not have stopped your levo, but obviously s/he is more that average ignorant about thyroid. So, don't just sit back and accept it, make a fuss!
Thank you I will look onto these. As for vitamins, I was taking pregnacare but haven't been taken these in awhile due to stomach problems i stopped taking everything to try work out the cause.
With a TSH that’s borderline, after only 6 weeks of not taking any, I wonder what it will be like in week 12. Worth getting tested again in week 12.
With symptoms and previous borderline results, as well as antibodies, I can’t see why you was taken off levothyroxine. The usual thing to do is for women to return to their pre pregnancy dose after giving birth.
Were you given a reason by the medical team as to why they wanted you to stop taking them?
Gosh! Thanks for clarifying. Luna5289 I would strongly advised getting in touch with your GP/Endo and getting retested, even if they only do the TSH but do ask/insist they also test FT4 and FT3. If you can, get yourself some private blood test (cheapest is Randox Thyroid - you can even get it for next day delivery via Amazon).
I think your going to find your updated results will suggest you need your thyroxine again.
I presume because I was started when I was pregnant (I was borderline about 2months prior but not started on anything) that they thought it was just a pregnancy thing, but as I've read here it was already high at the 6week check up so god knows what it is now!
Wow its all so confusing! I was taken off it by the medical team after i gave birth, I had to stay in for another 4days after my daughter was born n she had her bloods taken aswell, never heard anything about them so I presume she's OK! I then asked about restarting the levothyroxine and they said I would be seen at my 6week check up (that's the result I screen shot). My other results were taken at the hospital so I don't have access to them. So it's now been 11months since I stopped taking it. It was still on my repeat prescriptions so I told the pharmacist and he quried why it had been stopped and checked again with the (senior partner) GP but still not retested.
But since about February I've been feeling very run down, I had sepsis after the birth so I kinda put alot of stuff down to that. I've had numerous investigations to the point of convincing myself I have cancer! But now I'm starting to think it could have been my thyroid all along. I'm going to ring the GP in the morning and ask for them to retest me, I feel abit more prepared and understand it abit more. It's frustrating to think that potentially months of stress and feeling unwell (thinking I had post partum depression) could of all been avoided. Thankyou for everyone's comments!
But since about February I've been feeling very run down, I had sepsis after the birth
When you get your thyroid tested, ask for an iron panel to be done too and for your B12 and folate to be tested. Having had sepsis with an existing thyroid problem you could well be anaemic or iron/B12/folate deficient. Don't let the doctor put you off. I have heard that they often say things like "What do you expect, you've got a baby!"
Even people with babies can become anaemic.
Make sure to get a copy of the blood test results as well, and then post them on here, then ask for feedback.
Some useful links that your doctor shouldn't ignore (because the links all come from NICE).
Hi all, had my TSH rechecked and they've put me as borderline and to repeat in 8weeks. That doesn't look borderline to me! Still feeling absolutely terrible. I have an appointment with my GP on Monday about my stomach issues but want to discuss these results aswell.
No thats not borderline, its overt hypothyroidism and no wonder you feel terrible.
Your GP seems to be following the labs recommendation but as you have been on Levo previously You may have a good case for going back on Levo before the next blood test.
If this were me I'd be pushing hard for treatment to begin right away.
Forgot to add my serum ferritin is 34 ug/L (11.0-307.0). My understanding is anemia can be linked with hypothyroism, is this an OK level?
Serum Bilirium level (21) was borderline high aswell, again I dunno if everything's connected!
I've felt so unwell for weeks n I'm just desperate to get to the bottom of it n with my stomach issues I've convinced myself of the worst but due my age (35( the GPs seem so reluctant to investigate further
No, that level is all but deficient. 30 or less is considered deficient.
Are you eating plenty of red meat in your diet? Try eating chicken liver pate a few times a week and take vit C (orange juice works) to help it absorb but ferritin is very slow to raise.
How are your other vitamin levels - B12, folate & D3?
I eat quite abit of red meat (I always thought too much)
I'm not currently taking any supplements. I used to take pregnacare- new mum but since I've started with this left sided stomach pain n increased toilet trips I stopped everything to try work out what's causing it all! I'm terrified I've got bowel cancer so I'm concerned if my ferritin is abit low, or could that be because of my thyroid?
Thankyou for taking the time to reply, I feel like the doctors just don't listen n don't want questions.
The reason you feel terrible with multiple toilet trips etc etc is most likely due to your low thyroid hormones and I hope that in a way thats of some reassurance.
Low thyroid hormones cause gut absorption problems that will be so much worse because your thyroid levels are so low and you do really need to retsart treatment with Levo.
Try adding the chicken liver pate a few times a week with vit C to raise ferritin.
You havent goven the reference rnages for the vitamin tests but they look on the low side by most ranges. B12 should be 500++ and folate around 20 to be optimal so no doubt a certain amount of your symptoms can be helped by raising your vitamin levels to optimal.
Now that you are hypo you will need to supplement these levels continuously to raise your level and maintain them.
I'd recommend a good methyl B complex to help keep all your B vitamins in balance.
B complex suggestions: Slightly cheaper options with inactive B6:
Thank you, I'll have a look into these n get them ordered. Like i said I stopped everything to try get to the bottom of why I felt so unwell n stomach issues so I could have been making it worse myself! Fingers crossed I'll get somewhere with the GP on Monday!
ask GP to run thyroid peroxidase antibodies now if not done already .
and also ask GP to ask the lab to run fT4 if it hasn't been done on this test , ( if your fT4 is below range then it is termed overt hypothyroidism and they can start levo now .... if fT4 is still in range then is is termed 'subclinical' hypo... which means they should wait for a repeat TSH that is over range , and unfortunately your previous TSH was (just) within range.. so if they are being really pedantic they may not start yet even though TSH is now over 10 ... see the section in the NHS guidleines for treating subclinical hypo : nice.org.uk/guidance/ng145/... )
seems highly cruel (and damaging) to make you wait another 8 wks feeling this bad with kids to look after .
if this was the first unexpectedly ever over range TSH with no other history , then yes it is appropriate to wait and check that it isn't going to go down by itself ... but this is clearly not the case with you .
a decent GP seeing your history and earlier TSH over 5 after 6 wks off levo ,,and now TSH over 10..... should be trying to get you back on levo as soon as possible.
if they really insist on waiting for a 2nd 'over range' TSh before prescribing , then push for them to shorten the wait from 8 wks to 3 or 4 .
so it's still in range (only bloody just ) so 'technically' you are sub-clinical hypo even though TSH is now over 10... so technically they do need to have two over range TSh's to prescribe levo ....
but point out to GP how low in range this T4 result is, and how close to being over range the previous TSH was ... and how your symptoms are already making it impossible for you to function adequately.
hopefully, (if you get one with a brain) they will shortcut some of the red tape and get you on levo sooner rather than later.
I'm seeing a GP on Monday so I'm armed with information, thank you! Surely they could give me a small dose of levo (I was on 75mcg when I was pregnant last year). I'll try anything to make me feel well, I'm going back to work in less than a month, I love my job but I dunno how I'll be able to function feeling like this everyday.
inform them of date of starting back at work ... point out that if you started back on 50 or 75mcg levo this week there is a fighting chance you may feel human again in time to start work ... if not they will almost certainly be having to write you sick notes.
crossing fingers for you on monday ... if necessary be very firm with them ...trust yourself , you know what you need them to do .
Hi all, Just by way of an update. DISASTROUS appointment with a GP. Basically told me I'm depressed n that's what's causing my symptoms, referred me for counselling n suggested Sertraline. I asked about my thyroid again but just said as my ft4 is in range they wouldn't be starting me on any levo. I hate how they make u feel like ur wasting their time! So now I just have to wait until October for the next blood test. Frustrated isn't the word!
I'm appalled at this Luna , seems totally unreasonable to me .... even if depression was causing your symptoms ( which i don't think for a minute it is) ..... depression is NOT an explanation for the TSH being over 10 .
Below are the guidelines they are applying (too strictly , in my opinion) ,,, but GP's are also supposed to use their judgement , these guidelines are not set in stone, and with your history it is unlikely your hypothyroidism is going to get better by itself.
"1.5 Managing and monitoring subclinical hypothyroidism
Tests for people with confirmed subclinical hypothyroidism
Adults
1.5.1
Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.
Treating subclinical hypothyroidism
1.5.2
When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.
Adults
1.5.3
Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.
1.5.4
Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and
symptoms of hypothyroidism.
if symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."
page 1 of these guidelines contains this instruction to Doctors:
" Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service.It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian..... " nice.org.uk/guidance/ng145
Hi all, finally got a GP appointment next week to hopefully discuss my results. Bloods taken 2 weeks ago I'm hoping they will offer me Levo again to see if my symptoms improve, the last time I took it I was pregnant so no idea what was pregnancy related n what was thyroid!
I had my vitamin levels checked before but not this time round, I do take the pregnacare postnatal vitamins (I'm just using them up) so will look into others once these have gone
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