Previously when speaking with my GP's I have not really got very far and didn't really feel like my concerns were being addressed or even acknowledged. No face to face or even telephone conversations, just the same old cycle of being sent for bloods then being told all ok or 'currently stable' etc.
(For a bit of background I have tested positive for TPO antibodies, have had high TSH but only ever on private tests, last NHS test TSH was 3.0 - which is the lowest its ever been. I am 31 currently trying to conceive and have had early pregnancy losses)
I recently contacted the surgery again to say that although they had run bloods they had not actually addressed any of my concerns - I asked about TPO what this meant for me, does it increase miscarriage risk, should TSH be lower than 2.5 for trying to conceive etc.
Thankfully this time I received a phone call back from a Dr who demonstrated a little more empathy with my situation and recognised that I was feeling upset. Despite saying things along the line of you shouldn't really feel symptomatic until TSH above 10 and that my TSH result were completely normal and what most healthy people would have (the typical Dr chat...), she did recognise the risk with me being TPO positive and progressing to Hypo in the future and whilst currently trying to conceive she felt if best she write to an endo for advice of whether to treat or not as she said she didn't really know the answer.
Nearly 3 weeks later and I had a call back from her today, she said the endo wrote back and didn't see it necessary to treat as there was not sufficient evidence to support treating whilst TSH was in 'Normal Range'. She did however say that given the TPO the endo thought it best they see me themselves so she is now going to refer me to the endo.
I don't really know what to expect as to be honest I didn't think they would need/want to see me if they have already decided my case is not worth medicating and I assume there is nothing else they can do for me??
Sorry for long post, I just wondered if anyone else had had a similar experience to mine and what the likely outcome may be? what I should expect from the appointment.
Also I wondered what the process was like, what happens after a referral is made and during consultation? is it just a chat?
If medication is not deemed necessary then why else would an endo still want to see me in person?
Written by
DaisyChain22
To view profiles and participate in discussions please or .
What exactly are your most recent TSH, Ft4, Ft3 and vitamin D, folate, ferritin and B12 results and ranges
You need OPTIMAL Vitamin levels
Suggest you get private consultation once you have full test results
No point going to consultation without full thyroid and vitamin test results
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
you shouldn't really feel symptomatic until TSH above 10
That is a load of baloney. Symptoms don't usually arise due to high TSH, they arise due to low Free T3 (the active thyroid hormone) and in some people they also arise when Free T4 is low. Some people do perfectly well with low Free T4 as long as Free T3 is high enough for them, but the majority feel best with good levels of Free T3 and Free T4.
Note that Free T3 and/or Free T4 are likely to be low long before TSH reaches 10, and symptoms arise in many people long before TSH reaches 10.
...
TSH = Thyroid Stimulating Hormone is produced by the pituitary, NOT the thyroid.
There are some people who have a condition called Central Hypothyroidism in which their pituitary is unable to produce sufficient TSH to stimulate their thyroid adequately to produce enough T3 and T4.
I asked about TPO what this meant for me, does it increase miscarriage risk, should TSH be lower than 2.5 for trying to conceive etc.
Being hypothyroid makes it harder to conceive and increases miscarriage risk if you do conceive.
I had problems conceiving and ended up doing five rounds of IVF (back in the 1990s). I got pregnant three times and lost them all in the first trimester. I was told at the time that my thyroid was borderline underactive but required no treatment. With hindsight I was almost certainly low in iron/ferritin and magnesium, and probably low in several other vitamins and minerals.
What I didn't know then :
1) Hypothyroidism reduces the production of stomach acid, and as a result this makes it harder for the gut to extract nutrients from the diet. As a result low levels of vitamins and minerals are common in those with hypothyroidism.
2) Low levels of vitamin and minerals cause problems with conceiving and staying pregnant as well as low levels of thyroid hormones.
3) Babies born to women with low levels of thyroid hormones and low nutrients are far less likely to be healthy at birth and throughout life than babies born to healthy mothers.
4) So - before attempting to conceive - get some basics nutrients tested and then supplement to optimise any that are low.
5) Tests come with "reference ranges" which tell doctors whether the result of the test is at a good level. But ref ranges are incredibly wide. (It helps to save money.)
An example :
Vitamin D result of 52 nmol/L. A "sufficient" or "adequate" result is often quoted (by the NHS) as being 50nmol/L. But according to patients optimal levels of vitamin D are 100 - 150 nmol/L. So a doctor would tell you that your level of 52 nmol/L is "fine", but to feel at your best you might need a result of greater than 100 nmol/L. Having optimal levels of vitamin D before conception and throughout pregnancy will reduce the chances of bone problems in your offspring.
Low levels of B12 and folate increase the risk of neural tube defects in babies. Doctors routinely test folate in pregnant women but don't often test B12 - and the reference ranges for B12 are so low and so wide that very low levels are classified as "normal".
We always suggest for thyroid purposes that patients need optimal levels of Folate, B12, Vitamin D, ferritin (iron stores) and serum iron. Others that are worth knowing about are zinc, copper, selenium, magnesium, calcium. Most minerals should be tested before supplementing because toxicity should be avoided. But so should deficiency. And that is also true for conception and pregnancy.
I would also add here that monitoring your FT4 is ESSENTIAL for fetal health.
Importantly, the majority of fetal brain development happens in weeks 5-6.
This is often before most know they are even pregnant.
Therefore - regardless of how little your doctors seem to care, you need to know your FT4 BEFORE you get pregnant, to cover yourself in those first 5-6 weeks, and also increase your Levo throughout your pregnancy especially because the baby doesn’t start to make their own T4 until mid gestation. So until then it all comes from the mom.
I don’t recall what percent through range your FT4 “needs” to be, but I do know that below range or bottom of range is not good. And likely should be at least half through range, if not the three quarters we all aim for on a regular day! I’m actually not sure if there is a number you could find published … but when reading the clinical studies, there was conclusive evidence that below and bottom range FT4 in the first trimester causes for neurological issues for the baby.
If your FT4 is mid to upper range especially through mid gestation this risk is shown to be mitigated.
Disclaimer - I am not a doctor nor have I been hypo and pregnant. But I have done a ton of reading and studying of primary clinical research on hypo moms and fetal brain development in the first trimester. Not enough is ever said about the importance of the mom’s FT4 in those early weeks before they even know they are pregnant : (
I agree that monitoring of thyroid hormones in pregnancy is essential. But doctors (wrongly in my opinion) ignore Free T3. The links above show that women can have very healthy babies even on T3-only if levels are good enough.
Great links - I hadn't seen them before, but love how they reinforce that there are indeed many healthy babies from T3-only moms, that entirely challenge dogma.
That's the one hitch in the whole FT4-in-pregancy guidance!
Further, despite the inordinate amount of studies (going back to the original "cretinism") concluding fetal risks for low T4 moms.... there are absolutely gaps. One big one is that it is incredibly hard to get the right cohort together. There are far too many variables, and in each study you can poke a hole in how applicable it is. And the second one which I think is HUGE is that it is actually unethical to conduct any research on actual human fetuses that would answer the question for us. Therefore, there actually isn't ANY human study on how a fetus gets and uses FT4 much less FT3.
That being said, I also think that for the vast majority on T4, the studies that exist - as a group - tell a story. And there is logic we can apply from our knowledge of how FT4 and FT3 move about our bodies, and cross barriers (like the placenta.) And without knowing the exact WHY, we do see outcomes correlated with optimal FT4 through mid-gestation.
So I think in the vast majority of moms, it is essential to keep FT4 up while TTC. That it's not the time to go T3-mono while TTC but if you are, to realize it's an all-hands on deck situation.
I have read that the issue of whether T3 crosses the placenta has been tested by measuring T3 in the placenta when it is expelled after birth.
The problem with that is that babys' thyroids start to function fairly early in pregnancy, and they no longer need so much thyroid hormone from the mother. So by the time a baby has been born there would be little requirement for T4 or T3 to be present in the placenta.
This is worth browsing - although I skipped a lot of it!
In the first trimester, the developing fetus is initially dependent upon maternal thyroid hormone crossing the placental barrier.[1] Around week 16 (GA week 18) the fetal thyroid becomes active enough to support the fetal requirements for neural development.
Maternal thyroid hormone - required for early stages of brain development (Maternal Thyroid recent studies show both high and low thyroid hormone impact)
Fetal functions from week 10 - required for neural development, stimulates metabolism (protein, carbohydrate, lipid), reduced/absence = cretinism (see abnormalities)
Maternal thyroid function also changes in early pregnancy, through pituitary changes, resulting in thyroid stimulating hormone (TSH) levels decreasing during the transition from pre-pregnancy to early pregnancy.[2] This change in TSH was less predictable in women with thyroid antibodies. Generally maternal TSH and free T4 are maintained within the same range as those in nonpregnant women.
The misleading thing in the introduction is this sentence:
* Fetal functions from week 10 - required for neural development, stimulates metabolism (protein, carbohydrate, lipid), reduced/absence = cretinism (see abnormalities)
Even as the chart shows... it is NOT from week 10. It is squarely begun in weeks 5-6! I'm not sure why they would say "from week 10" when their own chart shows otherwise.
But this is exactly why optimal material Thyroid hormones are so important at weeks 5-6... because what the chart doesn't show is just how much happens in the week 5-6 of the bars that then continue through the 1st Trimester.
But this chart DOES ALSO show why moms with low FT4 discovered at weeks 8-10 (when many find out they are preganant) can actually remediate the situation by pumping up their FT4 THROUGH MID-GESTATION when the baby starts to product their own.
That is what studies show, for what they are worth, that whatever was missed in weeks 5-6, can be rectified "easily" at weeks 8-10, and even with a good chance if started as late as week 10 through mid-gestation (16 or 20).
As well as the advice above I suggest checking out the NHS advice on repeated miscarriages as there is usually a protocol to follow. Just google NHS miscarriage
Others have explained the importance of FT4 levels and keeping TSH low for best chance of conception and retaining the pregnancy. However, you also need a balanced immune system as many changes take place during pregnancy. Elevated thyroid antibodies are demonstrative of an immune system in high response, and present or later thyroid gland destruction and hormone deficiency.
'Thyroid peroxidase antibodies are associated with an increased risk of miscarriage and preterm birth, even when thyroid function is normal. Small trials indicate that the use of levothyroxine could reduce the incidence of such adverse outcomes'
Association of thyroid peroxidase antibodies with the rate of first-trimester miscarriage in euthyroid women with unexplained recurrent spontaneous abortion -frontiersin.org/journals/en...
These papers (and many others) demonstrate the need to reduce TPOAb. Many members have felt better after reducing thyroid antibodies by means of managing the triggers, eg adopting a gluten free diet, some going dairy free, reducing exposure to chemicals/detoxing high levels of heavy metals (if appropriate), improving sleep hygiene, etc. Also supplementing selenium has been proven to reduce TPOAb levels and optimising Vit D will help support and balance the immune system.
For further info read a book called "Your Healthy Pregnancy With Thyroid Disease" by Dana Trentini and Mary Shomon.
'There is evidence of increased fatal loss, and psychomotor and IQ deficits, in infants born to mothers with undiagnosed or inadequately treated hypothyroidism (including subclinical hypothyroidism)' [Casey et al, 2005].
I know my thyroid journey began many years ago but here is my take: got pregnant with our son+had an awful pregnancy+emergency c section delivery after suffered pre eclampsia (since learned what I went thru connected to under active thyroid, which I believe was responsible for my traumatic first pregnancy). Finally, after 4 years suffering after his birth, saw private consultant+had total thyroidectomy(large goitre that was ignored+blood tests 'within range')+diagnosed Hashimotos+put on Levo. 3 months later, pregnant with our daughter, went private+had great gynaechologist who kept close eye on my levels. Had normal pregnancy+ delivery (no c section) which again I believe was due to being on levo+having good gynaecologist who kept a close eye on me. I'm saying all this to say that I believe being on levo (after a loss@about 6 weeks prior to being on levo) resulted in a much better pregnancy+no issues+normal delivery. We weren't flush financially but went without other things like family holiday to go private, which was worth every penny. My takeaway: levo made all the difference. Trust your journey improves+your future is so bright that you need 😎
sorry to hear about your miscarriages . I’m new to thyroid business but there are many knowledgeable people on here that can help you. I had two miscarriages and also threatened to lose early on in my pregnancy with the children I did have . After my first miscarriage my dr suggested when I began to show signs of losing my first child that I was to rest , properly, feet up and do as little as possible, which would give my hormones a chance to rise , as he thought that could be the problem . Once I reached the 12 week stage I was ok , is this when the placenta takes hormones over I think . It might be worth trying as I think if I hadn’t have had that advice I would not have the children I have now. Hope this helps .
Sorry to hear about your losses ... I had 5 losses. 4 by 9wks, 5th at 13wks. Part of my equation was low progesterone which you need to get pregnant & to keep baby safe... the 13wk one was after trying to sort that side of things. However, due to other issues, my body couldn't cope... this was over 10yrs ago & the website & doctor list is no longer online, but I believe there is more available NHS wise. The only other thing I can point you in direction of is Agnus Castus. (If you can source Agnolyt go for that. Its the preparation that was used in studies) it works on the pituitary to normalise progesterone/estrogen levels.Hope you get answers xx
PS Beware of a lot of studies on natural progesterone - a lot of them used synthetic!!! (Or both) & wrote as if they were same thing ... being as synthetic is used to stop pregnancy & will abort, very much not the same.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
New results, anyone's thoughts please.
Most understanding NHS Endo
Back to the so****g TSH - AGAIN!
if I ever get medication what type of Levo is best 
