I hope someone of here can offer some advice, or at least reassure me I’m not being a crazy/hysterical woman!
I had blood tests at the start of July to try and diagnose the reason why my periods had disappeared for 7months. The Thyroid tests came back as:
TSH 5.23mlU/L (0.270-4.2), FT4 11.9pmol/L (12-22)
I spoke to a private gynae about it, they admitted thyroid wasn’t their specialty but tested TSH/FT4 again. I hadn’t read the info here about testing protocol, within 2hrs of waking up etc yet, so she did the test at 2-3pm and I didn’t know to challenge it. Results were:
TSH 3.0mlU/L (0.270-4.2), FT4 14.5pmol/L (12-22)
Gynae referred me back to GP because “GP’s are used to diagnosing/treating thyroid conditons”. And in the meantime I spontaneously ovulated 12th Aug
GP appointment this Monday 21st Aug to discuss fertility, and I asked if I should be on Levothyroxine to take my TSH levels <2mlU/L. She said no - “there is no clinical evidence that treating when levels are <10mlU/L has any benefit” and “it is difficult to trial things like this while TTC/pregnant, so the data just isn’t there to support it.”
I didn’t agree, so booked a private endocrinologist appointment in Bristol (2hrs drive) for 5th Sept.
Yesterday and today 24th, I ‘ve had a positive pregnancy tests (very exciting!)
Checking the NICE guidelines for pregnancy it says I should have been put on contraception until they got my levels below 2mlU/L, and then increased dose by 25mcg after a positive pregnancy test. It says if my hypothyroid is untreated I should seek “immediate medical care”.
GP wasn’t interested when I called this morning, 3weeks was their idea of “immediate”, so I called 111 and they booked an “within 24hrs appointment” on GP’s system.
A different GP called back and said;
1. Normal TSH range USED to be 5.5 so I would have been normal in the past.
2. Most people don’t get blood tests for thyroid issues, so if I hadn’t been testing for TTC I wouldn’t have even known about it.
3. He can’t see my private results, just the Gynae results from mid-afternoon. He doesn’t believe there is a ‘correct time of day’ to test. The results are ‘normal’, so therefore I am fine.
(I pointed out that 3mlU/L might be fine for a average adult, but it’s still >2 for pregnancy levels)
He has sent me a blood collection form, just for TSH. I have a full Ultimate Performance test by Medichecks to take anyway, so I will get it all tested regardless. But he might refuse to look at them.
Can anyone tell me if I’m doing the right thing to fight this tooth and nail?
He made me sounds so dramatic and essentially told me I was overreacting. I’m so upset, and scared that it is effect early organ development in baby or might cause miscarriage. Where can I go next if GP doesn’t listen?
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Holly_Tree
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GP has sent me a blood collection form, just for TSH. I have a full Ultimate Performance test by Medichecks to take anyway, so I will get it all tested regardless.
Thank you, my GP diagnosed missing period, thinning hair, weight gain and fatigue as PCOS without checking my thyroid levels. Technically they are supposed to rule out primary hypothyroidism before giving a PCOS diagnosis, so now I’m left wondering if I actually have PCOS or if it’s misdiagnosed Hypothyroid. My AMH and testosterone are high though, so I wanted a specialist to tell me what was going on.
Yes, that is the correct test - I needed it to cover all bases of fertility, PCOS, Cholesterol, blood sugar, Thyroid, autoimmune and vitamins etc before I spoke to the private endo.
I stopped taking all vitamins at the start of August, as per the medichecks notes. I was supposed to do the test mid-aug, but once I ovulated I had to change plans to after my next period arrived (or not, as it turned out). The medichecks test covers B12, folate too thankfully.
Lots of reading for me, thank you so much for sharing these.
You are absolutely doing the right thing fighting this tooth and nail, honestly you’re an incredible mother advocating for yourself and your child already! 👏👏
Gynae should have actually said “GP’s are used to completely ignoring/mistreating thyroid conditons”
Your baby can’t make its own thyroid hormone until it develops its own thyroid in 2nd trimester.
You need to get onto a good dose of T4, and soon as your labs show that you are hypothyroid + absent periods are also a sign. You’ve done absolutely the right thing in my opinion.
Thyroid UK has a list of approved practitioners who will help you move forward if GP continues to be clueless. Good luck and congrats ❤️
I’m so grateful for you saying this ❤️ really felt like I was just being overly anxious earlier. I’m hoping to call private endo tomorrow and ask for a quicker appointment, I can have a 2nd appointment to follow up with full results later.
Not overly anxious at all, completely appropriate concern! Good for you chasing this all up and cross referencing NICE guidelines, as you’re already realizing GPs need a refresher on them! Many others would have let themselves be fobbed off/convinced by the white coat syndrome rubbish.
Good luck with call to endo tomorrow. Come back to forum with updates, I’m sure everyone will want to know you are getting on OK 😊 🙏
This isn't black and white. The recommendation that TSH should be below 2.5 / 3.0 applies to women who are clearly hypothyroid and dependent on thyroid tablets. Someone with a functioning thyroid is able to respond to a slightly higher TSH by producing more hormone.In your case your blood test results suggest you might be hypothyroid, especially as hypothyroidism can cause fertility problems. We can't be sure you are hypothyroid but it seems reckless to assume you are not. I think they should offer you levothyroxine during the pregnancy and perhaps see if you can come off it a few months after the birth. This avoids unnecessary risk and allows for what might be a temporary dip in hormone levels.
jimh111 thanks, but the NICE guidelines are quite clear that both subclinical and overt patients should have medication to reduce levels to below 2mlU/L.
Because of my symptoms, over a year trying to get pregnant and both high TSH/low Ft4, it’s really difficult for me to hear you don’t think I am ‘clearly’ hypothyroid.
“If TFTs are not within the euthyroid range, advise delaying conception and using contraception until the woman is stabilised on levothyroxine (LT4) treatment.” NICE guidelines
I agree you should be given levothyroxine to bring your TSH down, it's cheap, safe and avoids any risk to the baby.I think you are quoting from the NICE Clinical Knowledge Summar (CKS). The actual NICE Guidelines don't cover pregnancy. The research I've seen looks at women who have been diagnosed with primary hypothyroidism on the basis of blood tests. I don't agree with this.
So, we have a situation where the summary advice to doctors is different to the formal guidance. I would go with the CKS and show it to your doctor.
I was trying to explain why your doctor might be reluctant to prescribe, I'm in favour of prescribing.
Ah! I’m using the words guidance / guidelines without realising they mean different things in terms of NICE documents. This is really useful to understand!
Holly, based on the 2 TFT results you shared, please be aware according to official guidance you would not be considered subclinical or overtly hypothyroid at this moment in time. jimh111 is correct on this.
Further more, please be aware that TFT are much more difficult to interpret during pregnancy.
As I’ve shared previously, it is also equal dangerous to you and your pregnancy to start Levothyroxine if not indicated.
With that said, it may be also useful to be aware that plenty of medical professionals use Levothyroxine to bring down TSH levels in preconception and pregnancy irrespective of a hypothyroid diagnosis.
My advice to you is to have your antibodies tested. And, if you find yourself in the position of being offered Levothyroxine, be aware that during pregnancy especially a clinician may go 1 of 2 ways. 1. Start you on a full replacement dose based on weight or 2. Start you on a low dose and take it from there.
In my personal experience, as dosing on weight is more of art than science, it would be advisable to start at a lower dose such as 25 or 50 and keeping a very close eye on TFTs.
Finally, FYI, we have trimester specific ranges for thyroid in pregnancies which will will be different based on lab and are you live in.
HealthStarDust I’m not sure if you read my original post, but the second test results were take mid-afternoon, when I understand TSH levels are usually at the lowest. I don’t believe that test was an accurate picture of my thyroid health.
Both tests were done June, so two months before pregnancy. I’ve been trying to retest since the start of August, but some of the tests needed to be taken cycle day 3 - since I hopefully won’t have a period any time soon, I’m testing on Tuesday just to get a handle on what’s going on.
Please be aware for the diagnosis of either overt hypothyroidism or subclinical, 2 TSH tests over range are required 3/6 months apart (there are of course many many problems with this).
I totally appreciate what you have shared regarding timing etc. I simply wish to make you aware of how the clinical picture looks to I expect most professionals based on the tests you have shared. And, of course, you want to be guided by symptoms too. Unfortunately, much of the symptoms of hypothyroidism are implicated in other diseases.
I am sure you will unearth this in your research too.
As I mentioned earlier, TFT are much more difficult to interpret during pregnancy as the demand on the thyroid changes and there’s need to be much more research and consensus on the interpretation of the tests during pregnancy.
So, when you do have a TFT test again as currently undiagnosed, that’ll be another thing to bear in mind.
“Checking the NICE guidelines for pregnancy it says I should have been put on contraception until they got my levels below 2mlU/L, and then increased dose by 25mcg after a positive pregnancy test.”
May you add the link of where you found this information. I am not sure it’s clearly stated in NICE Guidelines.
“If TFTs are not within the euthyroid range, advise delaying conception and using contraception until the woman is stabilised on levothyroxine (LT4) treatment.”
…
“Check that the woman understands there is likely to be an increased demand for LT4 treatment during pregnancy, and her dose of LT4 must be adjusted as early as possible in pregnancy to reduce the chance of obstetric and neonatal complications.
Advise the woman to seek immediate medical advice if pregnancy is suspected or confirmed.
Offer advice on sources of information and support, such as the British Thyroid Foundation leaflet Your guide to pregnancy and fertility in thyroid disorders.”
Which links to this document from British Thyroid Foundation;
This explains things. The left hand doesn't know what the right hand is doing. The NICE guidelines don't address pregnancy. Clinical studies and other guidance only look at patients with diagnosed hypothyroidism based on an elevated TSH and low fT4.
I think the CKS takes a more sensible approach and you should quote it. All the guidance relying on TSH is wrong, there can be other forms of hypothyroidism with normal blood hormone levels. Diagnosis should be based on signs, symptoms and response to therapy with TSH used as a safety net.
Your first GP was sort of correct in saying there is no evidence, at least up until a couple of years ago when I last looked. The second GP has got everything wrong, reference intervals are assay specific, it doesn't matter if a previous assay had different limits, time of day affects TSH and not knowing about their TSH during pregnancy is the GP's fault.
I hope I'm not confusing the issue. The guidance is a bit of a mess and the evidence looks at those with prediagnosed hypothyroidism but I feel an elevated TSH should be treated during pregnancy even though it hasn't been properly studied.
Holly_Tree ah! Yes I am aware of it. As it’s been pointed out to me CKS are not actually NICE Guidelines. But, they can be equally relied upon as I found out!
The thing is, no NICE guidelines or CKS actually recommends increasing dose upon conception. However, yes, there are multiple other guidance that do.
Unfortunately preconception and pregnancy is largely an unfocused area still in my view. Ideally, one should be on treatment before conception if needed. And, as has been pointed out, the advice pertains to people on Levothyroxine. With regards to starting treatment while pregnant, it’s more a case by case basis depending on thyroid results, your history, and your clinician.
What I will caution, if starting treatment while pregnant if not needed, there are huge risks to the pregnancy also.
How should I manage a woman who is preconception or pregnant?
Arrange a referral to an endocrinology specialist for all women with overt or subclinical hypothyroidism who are:
Planning a pregnancy
Check thyroid function tests (TFTs) before conception if possible.
If TFTs are not within the euthyroid range, advise delaying conception and using contraception until the woman is stabilised on levothyroxine (LT4) treatment. See the CKS topic on Contraception - assessment for more information.
Discuss with an endocrinologist if there is any uncertainty about initiation of treatment or what dose to prescribe while waiting for specialist review.
See the section on Initiation and titration in Prescribing information for detailed information on the initiation and titration of LT4 therapy.
Check that the woman understands there is likely to be an increased demand for LT4 treatment during pregnancy, and her dose of LT4 must be adjusted as early as possible in pregnancy to reduce the chance of obstetric and neonatal complications.
Advise the woman to seek immediate medical advice if pregnancy is suspected or confirmed.
Offer advice on sources of information and support, such as the British Thyroid Foundation leaflet Your guide to pregnancy and fertility in thyroid disorders.
Pregnant
Check TFTs immediately once pregnancy is confirmed, and interpret results using a pregnancy-related reference range.
Discuss urgently with an endocrinologist regarding initiation of, or changes to, dosage of LT4 and TFT monitoring while waiting for specialist review.
Yes, this is the NICE website I was referencing. I think they are just referring to management of the health condition. To be honest, “management” suggests a level of control and organisation to me - I’m not convinced my GP has either of those qualities..
Yes, I am more that aware of this summary. In fact, I shared it with the forum during my own experience and I believe none of the administrators were aware of it! And, as my own experience proves, CKS are equally to be relied upon with NICE guidelines.
Sorry, I’m not sure what the purpose of sharing it with me is in relation to what I have shared. Unless you was trying to demonstrate that there is some focus on it within official guidance or summaries? In which case I stand by my original point that it is still is largely unfocused area, as also corroborated by my experience of course.
This little amount of information for GPs in official sources be that guidelines or summaries is absolutely pitiful and a clear example of the structural misogyny in healthcare.
I agree with this but would not use the word 'huge', there are risks of too much and too little hormone but they are progressive and the risk from what is usually a small deviation from optimum levels is small. Of course even if very few are affected the impact on the individual is great.
TSH is one marker for thyroid status, signs and symptoms are more important. However, there is good evidence to keep TSH in the lower part of the reference interval prior to and during pregnancy.
Hi Jim. Not sure where “huge” is mentioned in my post?
Like you, and I believe we are singing on the same hymn sheet in this one, the evidence and official advice are very poor in hypothyroidism and are largely pertaining to diagnosed hypothyroidism. And as we know, the thyroid is fussy hormone, too much or too little hormone is not a safe place to be in irrespective of pregnancy, making it even more tricky when treating the thyroid.
Edit: I found the post you was referring to.
Edit: I believe your interpretation of word risk here is based on general population and statistical. Where as I am very much focus on the case by case individual level. And, I am also addressing an individual (in this case Holly_Tree ) .
To be out it bluntly, to start treatment for the thyroid if not clearly indicated, is a huge risk to the individual and their pregnancy as too little or too much hormone can result in miscarriage and other negative pregnancy outcomes. I believe it is in all women interest to be aware of this.
I don't like the phrase 'if not clearly indicated' as the guidance tends to be dogmatic and based on TSH. I agree there are risks from under and over activity. If TSH is a little high I would suggest giving 25 or 50 mcg levothyroxine to bring TSH below 2.0. This of course could be adjusted or stopped based on a follow-up blood test. The risks do appear to be proportional to the degree of variance from the normal.
It gets more difficult when a woman has very 'normal' blood test results and substantial hypothyroid symptoms. In many cases they have been unable to conceive until treated with thyroid hormones. Endocrinologists do not like this, it upsets their simple algorithms and consequently they take care never to put it to the test or carry out useful research.
Treatment is indicated by the overall clinical picture, not just measuring TSH and fT4 without checking fT3. Being unable to have periods is a common sign or hypothyroidism. Ideally a trial of thyroid hormone would have been given sometime ago, if it restored menses we would have a clear indication.
The problem is, as we see on the forum everyday, the same symptoms are also implicated in other diseases or ailments. And, each person experiences symptoms and their experience with treatment differently. For example, it’s also true that many women only begin to have absent periods when they start treatment.
We can both agree the official guidance is pants in this area, as is the the guidance on diagnosing in the first place.
I think a reasonable clinician would consider Levothyroxine at a low dose to bring that TSH down irrespective of a hypothyroidism diagnosis as also happens everyday with women trying to conceive or in pregnancy who are not hypothyroid.
Since the risk of miscarriage of over or under treatment in either established or unestablished hypothyroidism is not to be underestimated, it is best to be cautious and rule out anything else that could be going and be absolutely sure about a diagnosis rather than rushing to treat or diagnose based on symptoms that could be part of another disease and test results not even 3/6 months apart.
Dear Holly Tree, good for you for following up and advocating for your health and for your baby's. I am not an expert like so many on here, but I wanted to share with you that 27 years ago when I was pregnant for the first time, I was diagnosed with Hashimoto's but was not given any thyroxine until shortly after my baby was born. So I am guessing I went through most of my pregnancy with low or marginal thyroid levels but not low enough (or more likely TSH not high enough) to warrant medication under the guidelines at the time. My baby was very healthy. I am sharing this because I don't want you to be panicking. I think you are doing the right thing and taking a full thyroid test and then seeing a private endocrinologist is likely to be very helpful. Be sure to have your results in time to show them to the endo. Congratulations on your pregnancy, and I hope you are enjoying these early days.
Just wanted to say congratulations to you.My daughter is going through a similar thing and I will follow your replies with interest.She has been TTC for a year with no sucess and has an appointment with GP next month. She has a variety of health problems as she has long covid, one being TSH above 2.I know there could be other problems also. She has been using the ovulation prediction kits and most months getting no smiley face or just a flashing smiley for days on end(hope you know what I mean).Once again great news for you and you're in the right place for lots of good advice.
Echo all that has been said. Parenting is as much about trusting your instincts than anything else I have ever done. Battles on behalf of your child will be aplenty! So why not start now!
My only advice would be to view yourself as pregnant first now and the health issues second. Your body has spoken and pregnancy has happened. Look to folic acid 400mg if not already as this is important for your growing baby. Focus on your diet now and take comfort from Susiemalc you don’t need to stress out now so relax and go with your body.
Wishing you every success and fingers and toes crossed for you BOTH!
I think I would get a blood test for antibodies and see if it is actually hashimoto. Either ask your doctor to do the test and say it’s for my peace of mind (which is important for your mental health) or do your own. If the test is positive you can then ask for a referral to a specialist who hopefully has experience in thyroid and pregnancy, very best wishes x
You are right to fight for this, I became significantly unwell and lost two pregnancies because my tsh results were 5.6 and doctor dismissed. Despite being barely conscious until losing both pregnancies the doctors did not connect the dots to my thyroid. It was only months afterwards when still having hypothyroid symptoms and once my tsh got to 10 that they would give levothyroxine. You are correct that you should be avoiding pregnancy until your tsh is much lower and once pregnant an immediate increase in levothyroxine is required too. You need to fight this as it absolutely can cause miscarriages. I would advise take you tests with the correct morning timing and see what comes back from that then speak to the doctor again and discuss the guidelines with them that you have found and see what they say after that. Am not sure if it is still the case but you used to also be able to contact your local community midwife team directly for advice so that may be worth checking into to see if they can give you some advice too.
Hi Holly_Tree. I’ve read all the posts here relating to your post and as I was diagnosed with Hashimotos 11 months before my daughter was born, my husband and I decided to go with a private gynae for my pregnancy and birth. It was the best decision we made. He kept such a close eye on me, ensuring thyroid blood tests were there at my appointments. If that is at all possible for you, just do it !
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