Well I'm on my 4th miscarriage (1st trimester) since jan 20.
Every single test we've had done has come back normal for the both of us.
I'm here asking for advice again because literally each health care professional tells me something different and im running out of energy to continue like this.
Basically my question is , I have strange thyroid test results that you can see from my previous posts. My most recent one done at the hospital during my miscarriage showed my tsh being 0.4 but my ft4 being 14. My ft3 was 4 something. The ranges are the same as my previous post.
one nurse said to me that my tsh was considered too low and that by aiming for a tsh of 1 or 2 instead is the ideal range for pregnancy. She said excess thyroid hormone can be toxic to a new pregnancy.
Anyway , later on the same day i saw someone else who said no your tsh and thyroid levels are fine for pregnancy.
My tsh has been in this low range throughout every miscarriage I've had in the last 13 months.
I take 75mcg. What do you think could happen if I reduced it by 12mcg? Maybe my tsh would go up to a better level but then what happens to that low t4 ?
On 75 I do have some racy heart symptoms and short temper sometimes.
Please any advice or ideas or points in the right direction 🙏 x
I send my sympathy to you and know how upset you must be. I will look for some links and members who've been through the same as you re pregnancy will respond when they read your post.
I’m so very sorry Francesca0. Sending a virtual hug. x
For what it’s worth, I don’t think a reduction in dose is going to help. TSH becomes meaningless once you start taking levothyroxine for any length of time and your results, if anything, show under medication.
But I note that you’ve struggled to raise your dosage above 75mcg because it starts to make you feel worse. When that happens, it’s often because you have nutritional deficiencies like low iron, low vitamin B12 or low folate or low Vitamin D. Or sometimes, all of these! Hypothyroidism can cause sub-optimal gut absorption so that nutritional deficiencies become more likely. But all of the nutrients I’ve mentioned (along with others) are involved in the conversion of levothyroxine to the active form of thyroid hormone, T3.
Has your doctor checked your nutrient levels? It can sometimes be hard to persuade them to test what you need so many of us end up paying for private tests—there are some very reputable finger-prick testing laboratories who will do the full range of tests. See thyroiduk.org/getting-a-dia... I’ve used Blue Horizon, Medichecks and Thriva and find them all very good.
I wouldn’t be surprised if you were low in ferritin in particular—has your doctor done a full iron panel?
Thank you.I'm low on iron so ive been given ferrous sulphate to take but thats it. I know I should check the levels myself rather than trust the doctors from what I've read on here
Could low iron cause me to feel bad with a dose increase?
What you're saying sounds like it could be me. Those fts need to be higher but I just cant get up there. If my tsh was 4 or 5 id know for sure thats what I need
What would happen to my tsh if I could increase my dose without getting ill? Would it go to just zero?
I find it so confusing sometimes when different doctors and nurses tell me different things in the same day. Especially when it could be affecting my pregnancy outcome its really tough to hear one doctor say raise your dose and another say you must lower it.
I've been told a few times on here to check my nutritional deficiencies ... ill get it done x
Medichecks is good. I’m not sure which test would be best for your situation—it might be best to see if you get further advice on this post before putting an order in.
Iron is very much involved in the conversion of T4 (which is just the storage version of thyroid hormone) to T3 (the active form of the thyroid—the one that your cells actually use). So your low iron could be part of the puzzle.
Doctors tend to get obsessed about TSH and think it’s all they need to consider—but it’s a really poor measure for whether someone’s on enough thyroid hormone replacement. It can be completely suppressed—perhaps 0.05–but your FT3 and FT4 results could still be too low and indicate a need for additional levothyroxine. “In-range” FT3 and FT4 results don’t equate to “optimal” for many of us. You haven’t given the laboratory reference ranges for your FT3–but assuming it’s one of the usual U.K. ranges, that’s likely on the low side and would suggest you’re not converting enough levothyroxine (synthetic T4) to T3.
But I commonly see here people struggling to raise their levothyroxine dosage when their iron levels are low. I’m not sure why that is (not a health professional) but getting iron levels optimal seems to make a big difference. Best to test first though as some of the iron tests done in isolation can give a misleading picture. It does however seem as though your doctor considers you have anaemia and it would be worth getting your mitts on the blood tests he/she’s done and posting them here for further comment.
Jazzw this is such good help and advice ! I feel positive again that there are some things to work on here. Its really interesting too...... Thank You so much ill ask my gp first for nutrient blood tests before I order some, then a referral to an endo, and a copy of my recent iron levels and anything else they mightve done. And then ill post
Youre right I am repeating myself arent I. I dont mnownwhat mtfr testing is but I do know I've had every fertitility test done under the sun. I dont have any blood clotting problems.I am not gluten free.
I have only just begun taking ferrous sulphate, my level recently came back at 108 but with a normal platelet count.
I'm having a phone call app with my gp tomorrow and I'll ask for the testing, if he doesnt let me we are paying privately for the vitamin levels. Id also like a referral back to an endo.
I havent increased as soon as I'm pregnant no, but what I do do is have a test the minute I get a positive result. Some peoples tsh drop in early pregnancy due to hcg, wheres other womens shoot up to hypo levels. But here's where I'm confused because this last test I had I wrote above was literally the say before my miscarriage got in full swing. Which shows a low tsh.
Somethings wrong i just cant work out what but its looking like it could be that my vitamin levels are so bad that the medicine isn't working properly , and making me ill when I increase.
I suppose I'm feeling frustrated with the doctors too because they each say something different
Last September I suffered a ruptured ectopic. It should never have got to thaf stage because I was having constant scans and hcg tests (due to previous miscarriages they keep a close eye) which showed classic signs of ectopic but they missed it and it ruptured, causing me to lose a tube and almost my life.
During my most recent stay in hospital with this miscarriage , I even had a nurse try to argue with me that a low tsh indicates hypo and a high one is hyper. Constantly losing my notes or missing details ive just lost all faith.
During my most recent stay in hospital with this miscarriage , I even had a nurse try to argue with me that a low tsh indicates hypo ans a high one is hyper. Constantly losing my notes or missing details ive just lost all faith.
It doesn't happen often but people have reported that some doctors think high TSH = hyper and low TSH = hypo. Another absurdity is that some doctors think T3 converts to T4, but it is actually the other way around.
I just wanted to add to Jazzw 's advice...
As well as nutrient deficiencies causing problems with tolerating thyroid hormones another possible culprit is low or high levels of cortisol.
I always think that optimising nutrients is the first thing to look at (and doing so may improve cortisol output - no guarantees though). But if improving nutrients, going gluten free, optimising thyroid hormones etc still leaves lots of issues, I would suggest checking out your cortisol levels. Doctors can test cortisol (sometimes) but they use a single blood test. Since cortisol has a circadian rhythm a single test (whjich is often done at a random time of day) is utterly useless. If it is done it needs to be done at about 8am - 9am which is when cortisol output is at its greatest.
The better test (in the view of many patients) is that people should do a saliva cortisol test. This will provide far more info than a single random blood sample.
Requirements for a saliva cortisol test :
1) Use a 4-sample test. Paying for more samples to be tested e.g. 5 or 6 rarely adds anything useful and costs more.
2) Always get a saliva test done which includes a DHEA result.
3) Some companies have very unhelpful reference ranges and can't measure tiny amounts of cortisol, so they give people useless results like :
Result = < 1.5 ; Range = < 1.5. Useless!
4) The best tests up until now have been Regenerus Labs and Genova Diagnostics, but the Regenerus Labs test appears to have been wiped from their website. I have no idea why or whether it will be back.
My commiserations and sympathies on your miscarriages. I had three of them back in the 90s so I know how you feel. ***Hugs***
Could cortisol be responsible for making my tsh so low ? By stopping my pituitary sending tsh out ?Ill get a blood cortisol test done as well as the saliva one, ill look up those companies you recommended.
Thank you, it has been nice to talk to people who truly know how I feel. X
Make sure the timing of it is right. You want to catch the cortisol at its highest point and obviously nobody can say exactly when that is - but for most people it is around 8am - 9am.
Regarding the link between thyroid and cortisol, these links might help :
Please note that high cortisol and low cortisol have a lot of very similar symptoms, so guessing which one you have (if either) is not a good idea and not remotely reliable.
Several years ago I assumed I had low cortisol. I did a cortisol saliva test and sent it off to the lab, then I went on holiday for two weeks. While I was on holiday I took an adrenal glandular product (I was so totally convinced my cortisol was low).
When I got back home my results were waiting for me from the test I had. 3 out of 4 of them were well over the range, and the one that wasn't was over 90% of the way through the range.
While I'd been on the adrenal glandular I'd been extremely bad tempered, almost to the point of being deranged. Oh, and my severe insomnia was even worse than ever, which I would have struggled to believe was even possible before then.
Moral of this tale... Test cortisol so you know what you are dealing with - don't guess like I did!
You said you were trying strictly gluten free diet
I had the test , and I don’t have the coeliac disease. I’ll try a gluten free diet thank you
It needs to be absolutely strictly gluten free to be effective
Also in reply to me comment
Essential to regularly retest vitamin levels
You replied
Ok , I’m on it
Optimal vitamin levels are
Vitamin D at least around 80nmol and around 100nmol maybe better
Folate at least half way through range (but not over range)
B12 at least over 500 (but not over range)
Ferritin at least half way through range
Low vitamin levels inevitably lead to low TSH, despite low Ft3
75mcg is very low dose unless you are extremely petite
Do you always get same brand of levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
I am quite small. Im 5 ft 4 and 55kg.I did try gluten free for about 2 weeks. Felt nothing at all. Its true im I don't have cealic disease. Im guessing it'll be something like a year to make a difference stopping gluten.
I've come back with the same questions as last time without changing anything I can see that now. Really sorry x
Yes, gluten intolerance with Hashimoto’s is not same as coeliac. You may not necessarily notice any significant difference....but it can help improve conversion of Ft4 to Ft3. (Obviously need to regularly retest TSH, Ft4 and Ft3 together to see this)
It can help improve gut function, help improve vitamin absorption.....but majority of Hashimoto’s patients still need to supplement virtually continuously to maintain optimal vitamin levels
Obviously good vitamin levels essential for a baby’s development
My daughter was in 175 mcg of thyroxine and her first pregnancy was fine. Between her first pregnancy and second her gp reduced her thyroxine because her tsh was a little low . My daughter then had a miscarriage. It could have been coincidence, but I think not. I said she had to see her gp to have it out back up. She conceived soon after and had a full term pregnancy without any further problems. So many women go through the heartache of miscarriage, some of them multiple purely because their thyroid levels are too low to sustain a full term pregnancy .
Wow!! Its so frustrating when it couldve been avoided by having the right advice. Miscarriage is so so hard to deal with I'm so sorry shes been through it.I find so many stories about pregnancy loss due to low thyroid but not so many for excess thyroid, just a few.
My actual gp would refuse an increase knowing my tsh was 0.4. Theres no way he would let me go up even with low fts.
I'm so glad shes got a little baby now ❤😊 gives me hope xxxxx
You will need to see thyroid specialist endocrinologist to get dose increase
Email Thyroid UK for list of recommend thyroid specialist endocrinologists........NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Strictly gluten free diet helps or is often absolutely essential to make progress
Could cortisol be responsible for making my tsh so low ?
It is possible that you have a degree of central hypothyroidism (CH) that is causing your low TSH with lowish thyroid hormones.
In CH the pituitary (which produces TSH) is unable to produce enough TSH for your needs.
In fact, in the worst cases, someone could have CH with a perfectly healthy thyroid which just isn't getting sufficient stimulation from TSH (Thyroid Stimulating Hormone).
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