I appreciate any help anyone can offer me on this. I'll try to be succint!
I think I have suffered with mild hypothyroidism since I was a teenager. I am 33 now and tick a large number of the typical symptoms (although not in an extreme form) and so I eventually asked my GP for a blood test about 5 years ago to investigate. At that time my TSH result was 4.6 and I was told this was normal so I accepted it and just carried on coping with the symptoms. Since having my little boy 2 years ago, of course, the fatigue has worsened considerably (through running around after a toddler!) along with other symptoms such as problems sleeping and a complete inability (no matter what I tried) to produce enough breastmilk to breastfeed him when he was born. I am, thankfully, 4 months pregnant with our second child now but it took us about 8 months to conceive so I was starting to get concerned again that an underactive thyroid might be to blame. My GP ran a full suite of blood tests when I was about 10 weeks pregnant but would only test for TSH not T4, T3, antibodies etc despite me asking. My TSH level was 4.2 miu/L (ref. range 0.2-6). I take a pre-natal vitamin so my folate levels are very high but my vitamin B12 is 399 ng/L (ref. range 180-910) and my ferritin level was 34ng/ml (ref. range 10-291) so they seem quite low and could possibly account for some of the symptoms? I have also read that low ferritin might be linked to poor T3/T4 conversion? I tried to get my doctor to investigate further but he just kept saying my result is 'normal' and that no-one would diagnose or medicate me at this TSH level and that medicating could be dangerous? Is this true? Could anyone offer any advice on this at all - particularly with regard to this TSH level in pregnancy as I have worried myself reading that TSH should be lower than 3 during pregnancy and ideally around 2 otherwise there is increased risk of miscarriage etc? I think I will order a fingerprick test from either medichecks or bluehorizon if people recommend them as at least I can try and find out the T3/T4 levels and antibodies etc. I'm just unsure of their accuracy as they are so expensive! Also, I live in the North West (Cheshire) so if anybody could recommend an endocrinologist I would be most grateful. I can access private healthcare through my job so depending on my policy I may have the option of pursuing this privately. I just want to make sure I have a healthy a pregnancy as possible so I am willing to do anything to try and get it sorted if it is a problem. I just don't know if my TSH really is fine and 'normal' or if I'm just being fobbed off if the doctor is blindly following NHS guidelines?
Many thanks for any advice anyone can offer (sorry I tried to be succinct!)
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Disaster! At your stage of pregnancy TSH should be 2 or less. Urgent treatment is essential for you and your baby's health. No delaying -you need treatment straightaway. T4 if necessary.
Hi, Thanks for your swift reply. I have just called the 24 hour GP helpline of my healthcare provider but the GP on the phone has also said that he would consider this level normal and wouldn't suggest anything different to that of my GP so I'm totally stumped now :/ I think I will order the home blood tests and/or see if I can persuade my midwife to progress it further and find another doctor!
Hi, I am totally new to this forum so I didn't know this, thanks. A bit lost as to where to go from here? I guess either ask for a different doctor at my practice or try my private healthcare provider again tomorrow. I can't understand why they are being so lax about it :/ Thanks.
Hi, Thanks, I'm going to try and speak to my midwife tomorrow and see if she can refer me to someone else or at least put pressure on my GP..I'll let you all know how I get on, thanks.
I don't know about an endo , but a £29 thyroid monitoring test ( available when they have an offer on thursdays ) from medichecks,com , which will test T4 , T3 and TSH seems a worth while investment. When they are an offer you can buy a few kits , maybe send one a month while preganant. If you're levels go out of range , you can show the results to your GP before any harm is done , and they will have to treat you based on the scientific evidence.
Hi, Thank you so much for your reply. I will order a full thyroid check now so that, I can at least get another opinion and potentially provide my GP with some evidence. I just hope he is right after all. Thanks again.
Hi, Thanks for the links and info. Everything that I read on google suggests my TSH is too high and vitamin B12 and ferritin are too low so I can't understand why they are fobbing me off so readily when I'm pregnant? Really frustrating :/ Thanks.
Please fight to get them to take this seriously. Even if it means you ringing endos yourself to get the treatment you need. Don't give up. I say this as a a grandmother of four babies who didn't take breath due to undiagnosed Hypothyroidism of my d-i-l.
Thanks for your support and I am so sorry for your losses. That really is so sad and my biggest fear. I think first thing tomorrow morning I will try and get hold of my midwife and see if she can apply pressure from her side..then try the doctors and my healthcare provider again. Thanks.
Check TFTs immediately once pregnancy is confirmed.
Discuss urgently with an endocrinologist regarding initiation of, or changes to, dosage of LT4 and TFT monitoring while waiting for review — trimester-specific TFT reference ranges may vary locally.
Show your GP this extract from the Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee:
13. The serum TSH reference range in pregnancy is 0·4–2·5 mU/l in the first trimester and 0·4–3·0 mU/l in the second and third trimesters or should be based on the trimester-specific reference range for the population if available. These reference ranges should be achieved where possible with appropriate doses of L-T4 preconception and most importantly in the first trimester (1/++0). L-T4/L-T3 combination therapy is not recommended in pregnancy (1/+00).
Thankyou for all these links..I'm going to end up printing out a whole tree! It amazes me that all these doctors just put the blinkers on and don't seem to even want to engage in the conversation. I'll keep hassling, thanks,
Hi, thanks for this..it's nice to know that I'm not being a hypochondriac like the doctor is making me feel like :/ I've contacted my midwife today to see if she can help too. Thanks.
It's so hard to comprehend the doctors don't know, but they simply don't and do/say what they Areprogrammed to, they aren't into thyroid, I've only found one out of many who will look outside the box a bit, I'm here in northwest, I had my babes 30 years ago,
I'm sorting myself now - couldn't do the full ger test well enough and had it taken at the local hospital, medicheck gave me the options, Results back in two days on e Mamie, marvellous, worth every penny, expect you can get it done on your insurance
If you have private healthcare tell your GP to refer you to an endo, don't take no for an answer, if you need to contact their practice manager. This is totally unacceptable!
Hi, thanks for your message. I don't know how it all works so I'm trying to get in touch with my healthcare provider today to see how I go about getting a referral etc. Thanks
Please do t worry as you have had a first baby already, your body coped admirably, I had pre eclampsia first time around and then only now can see I was swinging from hypo to hyper after the birth, I went on to have a second and third birth fine with the same body and ignorant of any of this
I did go low in iron the third time at 28 weeks and took homeopathic support to absorb it, great level came back, please don't worry xxx you are taking full measures by checking this now and for your future, I'm doing it now I'm 60 lol and can see me too had it when teenager! I was just called moody 🌞 One step at time, get your vitamin levels xx I'm new to this, it's the free t3 which feeds around your body and gives good feel factor, correct me anyone if needsbe X
Thanks for these messages, it is such a worry. I was feeling positive about half an hour ago when I rang my midwife and she said she would book me in to speak to a consultant about it. She has since rang back saying that he has looked at my blood test results and is not worried as my 4.2 sits within the 0.2-6 range. I hope these doctors are right. I have kept my appointment with him anyway (albeit in 3 weeks time) and I'm going to order a home test kit now to have a look at my T3/T4/antibodies etc as perhaps this will help confirm whether there really is a problem or not. Thanks again.
We might have hoped that a midwife would look at the pregnancy-specific TSH ranges (might be one for each trimester) - rather than the general purpose TSH range.
Maybe you could call the lab itself and ask what their pregnancy ranges are?
Oh that's a great idea..I hadn't realised the labs may have a different range for pregnancy. Should I ask the doctors surgery what labs they use? Thanks
P.s. So sorry, I got muddled with the messages and meant to thank you for your reassurance and sharing your experience as it has made me feel better! I'm so pleased you managed three wonderful babies fine, despite suffering with it undiagnosed. There must be so many more women out there with the same problems and not getting listened to. Very frustrating. Thanks again
The others here will guide you if needed, you are at right place
Easy to say but please please don't worry too much, I'm sure it's all fine , any help you may or may not need is right here thank goodness if anything it's only a tweak
Important to keep perspective, I do so understand
Would it be helpful to test vitamins by blood test, this is very reassuring ! I couldn't do the finger blood and popped to local clinic for it, following healthy diet and all pregnancy guidance brings we'll being itself, huge reassurance you've been through this b4 and all good ( my midwife was adamant your body copes better once it's done it once anyway ! 😊).
Ps there are so many positives and the wonderful reassuring scans etc, chin up, it will soon pass it will be 👍 Yes too much info sometimes, there is something to be said that ignorance is bliss 🌞 Get head in sun and lap it in, are you having a little boy or girl 🌸❄️
Hi everyone! Thank you so much for your support last week, I really appreciated it as I was getting myself so worried and when doctors don't listen to your concerns it leaves you feeling a bit helpless. Just an update here and also another request for a bit of guidance if you don't mind?
So, I spoke to my midwife who has made me an appointment with a consultant to discuss my worries although, because he looked at my results and thinks that my TSH is fine, it isn't for another two weeks or so yet. I ordered a Medichecks thyroid plus test and have just got my results back. The GP comment on it is that my results suggest my thyroid is becoming underactive as I have a high TSH and Low Thyroxine and that I should go and see my GP to discuss it. My antibodies, he said look normal though which is good.
My results are as follows:
*TSH - 4.51 mIU/L (ref.range 0.27 - 4.20)
*Free Thyroxine - 10.79 pmol/L (ref. range 12.00 - 22.00)
Total Thyroxine (T4) - 92.2 nmol/L (ref. range 59.00 - 154.00)
Free T3 - 3.99 pmol/L (ref. range 3.10 - 6.80)
Thyroglobulin Antibody - 66.46 IU/mL (ref. range 0.00 - 115.00)
So I'm just doing a quick bit of googling now before I can properly sit down tonight to research but I'm getting very confused as 'normal' T3/T4 ranges seem to vary across the web and they also report them in different units. Does anyone have any idea if my 10.79 pmol/L free thyroxine really does indicate mild hypothyroidism when in conjunction with my TSH of 4.5? I have seen the normal reference range for free T4 stated as 9-25 pmol/L elsewhere whilst my medichecks range states 12-22 so could 10.79 actually be ok?
I have had three TSH tests in the last 5 years; one five years ago and two in the last month and they all sit between 4.2-4.5 so is this really just my 'normal'? I feel like I suffer a LOT of classic hypothyroid symptoms and it really does affect my quality of life etc but I do think I suffer relatively mildly compared to others, e.g. my hair isn't falling out and I'm not bed-ridden, so I think this fits with my TSH being elevated but not off the charts? Do you think the doctor will just fob me off again with these new results or do I need to seriously get hassling asap for an appointment/referral to endocrinologist and medication? Surely there is merit in at least trying to lower my TSH levels to reduce the risk to my baby and see if my symptoms and quality of life improve? I can't understand their reluctance to do anything. I know no-one can give medical advice on here, I really just want to get some opinions on my results, if possible, and prepare myself for my doctor's reaction as I'm determined to fight and not risk the health of my baby but I don't know if he'll just try and fob me off by saying my results are 'normal'.
Thanks so much again for any advice you can offer and sorry for the long message!
Don't go trawling the internet for 'normal' ranges. You use the ranges attached to your results. As I said earlier on the thread your TSH is too high and your FT4 too low for a pregnant woman and you should be prescribed Levothyroxine ASAP. Refer your GP, midwife and the consultant to the BTA trimester-specific advice I posted above and the NICE CKS Helvella posted.
Hi, thanks so much for the reassurance..I'm not the best at standing up for myself and I hate how they make you feel like you're causing a fuss over nothing so I just want to be prepared for their 'standard' response. I think I will ring the doctors tomorrow morning and ask for an appointment with another doctor at the practice and see if I can get a referral to a doctor/endocrinologist that knows what they're talking about! Thanks again for the links, I shall get printing!
I'm sorry you are not being better looked after. I would see every damn doctor in the practice until one of them prescribes at least 50mcg Levothyroxine.
A pity Clutter won't be with you to take you in to see each doctor. I am fairly confident the rest of the day for each of those doctors would be severely affected by the experience.
Sorry to bother again but I've just been thrown a huge curveball!! I had an appointment booked with a different doctor for next week to thrash out the thyroid issue and then my doctor rang yesterday to say that some other blood tests have come back which show I've got Coeliac disease! I can't really believe it as I have none of the classic gastro-intestinal symptoms of it and bread/pasta etc makes up a pretty significant part of my diet! It would explain my constant fatigue however and my low Vitamin B12 and ferritin levels on my blood test. I have been taking a good probiotic supplement for the past 8 years so perhaps they have kept the gastric symptoms at bay.
So now I'm wondering if my consistently elevated (but not out-of control) TSH is perhaps due to the coeliac disease creating my vitamin and iron deficiency (I've always been quite anaemic) and stopping my T4 converting to T3 efficiently (perhaps indicated by my low T3 and T4). I have read that once you have coeliacs you are more likely to have other auto-immune disorders and my bloods did test positive for the two main thyroid antibodies but in the 'normal' range. Does anyone know if having just the presence of the antibodies means the thyroid problem is auto-immune or does everybody tend to have a few of these antibodies knocking around in their system and only a hugely elevated antibody result indicates Hashimotos?
I will be seeing the doctor next Wednesday and he will refer me to a gastro-specialist of some kind but I won't be able to have an endoscopy whilst pregnant to have it confirmed 100%. What I'm wondering is whether going gluten free will ultimately fix the thyroid issue once my body starts absorbing vitamins properly or whether the mere presence of thyroid antibodies may indicate a secondary auto-immune disorder? Obviously I want to bring my TSH down fast whilst I'm pregnant and I think going gluten free may take a long time to have an effect on my TSH (if this is the true cause). Even on the phone yesterday my doctor refused to listen to me about my thyroid so he is definitely not interested in medicating me for it..I'm hoping the specialist I get referred to will sort me out as, I'm so fed up, I'm not really going to take no for an answer now!
So, after all that ramble (apologies) does anyone have any experience or knowledge of the connection between coeliac and hypothyroidism? Could it possibly be the answer and a diet change could fix all my woes?! Does the presence of any thyroid antibodies suggest a secondary attack from my immune system or is a few antibodies just quite normal? I appreciate if no-one can answer any of these..I'm kind of just thinking out loud really and also wanted to share in case anybody else might want to look into 'silent' coeliac disease/vitamin deficiency as part of their thyroid puzzle.
Hi Aijkan, yes, this is a concern - as per the comments above, your TSH should be 2 or below for healthy pregnancy. Can you speak to a different doctor at your practice about this?
You may get more tailored responses if you post a new question, as your current post is on quite an old thread - you risk getting list in all the existing messages.
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