Hi all..I'm new here so please excuse me if I haven't posted in the correct forum.
I was wondering if feedback could be provided please-
Age-36
TSH- 21.40 (0.27-4.20)
T4- 11.4 (12.0-22.0)
(Serum Total 25- OH bit DLevel)- 98nmo/L
B12- 595 Ng/L (197-771)
Serum Ferritin- 15 ug/L (13-150)
Serum Folate- 10.1 ug/L (2.4- 9999)
Bloods taken in the morning- I had fasted the night before.
The doctor has prescribed Levythroxine 25mcg 1 x morning).
I recently started taking Prenatals (containing Biotin). Started in December as ttc in few months. Regular periods monthly. Heavy-ish. They contain iron and other vitamins..
Controlled BP up until two weeks ago as GP has changed one of my tablets (saw a consultant they wrote to GP to switch a certain medication- now on Methyldopa).
Would there be a reason why TSH is elevated? I did have slightly elevated TSH last year, but it came down without any medication.
I know it's important to take medication and bring down TSH for conceiving and having a successful pregnancy.. But there would be no way this would be an anomaly?
GP has just prescribed and not said why it's high..I didn't have a chance to mention that I'm on vitamins..
I'm always quite fatigued- but I get on with my day, no loss of sleep. Feel cold at times. Stress at work, but again it's been like that for some time so haven't noticed much when I get stressed.
Some level of walking in work (but then too tired to go to the gym or anything like that after work).
Could you provide on advice?
I'm on quite a few tablets and ideally don't want to be on another (Levythyroxine).
Thanks in advance
Written by
IzSmi
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My IVF clinic said that your TSH should be as close as possible to 2 in order to conceive. They gave me levothyroxine and got my levels down before conception even though my TSH has always been below 10. I found that my symptoms of fatigue, brain fog, coldness and hair loss went away after about a month taking levothyroxine. You could retest privately if you think it's an anomaly? I see that they have a list of testing services in the site menu.
Thank you.. It seems at if I'll need to take Levo and ofcourse don't want to risk what could potentially happen if I don't. It's just that it seems it's one thing after another at the moment- with changing medication for existing BP, TTC, Ferritin Levels low, having NF1 etc
A day prior. However they never stated to stop. I stopped myself due to iron levels etc, not because I thought it would have an impact on TSH. The Biotin in the vitamins was 100ug. Maybe not enough to have an impact that much..I've now not taken vitamins for 4 days or so and considering taking a private full Thyroid panel test after 7th day. I did take iron (Feroglobin liquid yesterday) however.
100 might be fine, but better to redo and avoid in the future.
It def does interfere though.
Also…
Your t4 is dangerously low for fetal development, specifically but not limited to neurological development that happens at week 5 - which is very shortly after you even learn you are pregnant and have time to do anything about it.
I am not a doctor nor have I been pregnant and hypo at the same time. But I’ve done a deep dive or two on the topic.
Improving your ft4 now before conceiving could remediate risk to the fetus in those early weeks.
Thank you, I'm hoping to sort this before I get pregnant. I've been following some articles on Reddit and not many people state having all this in check is vital for trying/ conceiving and pregnancy.
Thanks FallingInReverse.. I'll definitely to address first.. Its a shame as I don't want to leave trying to conceive any longer than I have to..I'll try to keep off the biotin or at least know now to mention this for any tests in the future
You will see for yourself over time… this forum, somehow, has brilliant knowledgeable people that collectively know more than anyone you will come across.
We all know “you shouldn’t get medical advice from Internet forums.” Very true! But, again, somehow, this one is different.
The important part is we all need to do our homework, use our brains (even when foggy!), get other opinions, and always pair it up with the reality of navigating the actual medical establishment. You will get smarter than you ever imagined on this stuff too!
I know you don’t want to hold of TTC. Work with purpose to address your hypothyroid levels. Low fetal levels has researched outcomes of neurological issues like adhd, being slow, etc.
Hi IzSmi. if you had raised TSH last year ( even though it resolved temporarily ) and it's raised again now , and the fT4 is now below range ... and this combined with the symptoms you describe which are classic hypothyroid symptoms , then your latest TSH of 21 is extremely unlikely to be a mistake , or something that will resolve by itself ,,, and even if fT4 / TSH level do improve again, i'm afraid this would only be temporary, you're highly likely to go hypothyroid again in the near future ~ you clearly have a thyroid that is struggling to keep up with your needs.
The most common cause of this is Autoimmune Hypothyroidism , where the immune system damages the thyroid gland meaning it can no longer make enough T4/T3 for your needs ~ this damage tends to happen in fit's and start's , (hence you apparently getting better after last year), but the damage to thyroid progressively accumulates until your thyroid is eventually so damaged it cannot make enough T4 and fT4 falls below range and stays there and TSH rises over 10 and keeps rising , and the only solution is to take replacement thyroid hormone for life . There is no cure / treatment to prevent the autoimmune damage. There are other casues for hypothyroidism so to be sure , ask your GP to test thyroid antibodies TPOab , if these are raised it confirms that you have autoimmune damage going on.
I'm sorry , i know that is not what you want to hear.
it is very important that you do not get pregnant until your hypothyroidism is treated and you are stabilised on correct dose of levothyroxine , ie two TSH results below about 2 ish, , and fT4 reasonably high in range ~ giving your body a steady / reliable supply of replacement T4 ( from Levo) . Babies rely totally on maternal T4 supplies for their development during the first approx 12 wks of pregnancy , (until they have grown a thyroid gland of their own) ,,, if your fT4 falls too low during this time , developmental problems can occur, plus increased risk of miscarriage.
i am very surprised that the GP has prescribed such a low dose of levo to start with , NHS guidelines tell GP's to start hypothyroid patients on 50mcg unless patient is elderly or has heart problems . so make sure you don't get left on 25mcg for long as it will not be anywhere near enough .
Thank you very much... I'll need to book an appointment with them and perhaps get a referral to Endo? I have private insurance with work but have never used it and confused on how to do so until I do some more research about how to get referred. I hope that my levels come down and may consider speaking with GP about the dosage. I have high BP and didn't note the slightly high cholesterol level.. But maybe that's why they offered a low dosage?
have edited reply above to add a bit i forgot to write . sorry in a bit of a rush
endo referral not usually necessary for hypothyroidism ~ GP can confirm autoimmune cause and prescribe levo.
i don't think High BP is usually a reason to start on such a low dose , but discuss with prescribing GP.
High cholesterol should go down by itself once hypo correctly treated , hypothyroidism is a known cause of high cholesterol.
correcting hypothyroidism can take many months until the correct dose is reached , starting at extremely low dose just make this process take longer. But equally starting at full dose can be an unpleasant shock to a body that has got used to going more slowly, so a balance has to be found between taking too long and getting there too fast .
A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.
"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."
some bumf ( to help you understand how NHS GP should be treating you) :
nice.org.uk/guidance/ng145/... (section 1.3 applies to you , you have confirmed primary hypothyroidism ie . your TSH is over 10 and your fT4 is below range)
High BP is also a sign of untreated or undertreated hypothyroidism, IzSmi , so maybe it’ll be the blood pressure tablets you will in time be able to stop taking. Fingers crossed.
Thanks- I have had high BP since I was 17 years of though.. and can't remember if they tested Thyroid levels back then. My BP is more so associated with Neurofibromatosis Type 1.
oh ... ok , maybe not then in your case . Must admit i've no idea what nearofibrothingy is . shame you can't opt out of having thyroid problems too , sounds like you've already got your fair share of 'stuff' .
Yes and even when I thought it was only the NF I had to address along with change of blood pressure tablets the Thyroid thing comes along and wants a seat too! "Neurofibromatosis 1 (NF1) is a multisystem disorder characterized by multiple café au lait macules, intertriginous freckling, multiple cutaneous neurofibromas, and learning disability or behavior problems. About half of people with NF1 have plexiform neurofibromas, but most are internal and not suspected clinically."
IzSmi Im glad tatty underlined what she did. Im compelled to reiterate that fetal neurological development happens beginning at week 5. It last for a few weeks , and the importance of week 5 can’t be overstated.
The baby relies entirely on maternal thyroid hormone at that stage ( through mid gestation).
Your ft4 must be solidly mid to upper range before you conceive for your baby to have enough by week 5. I’m not sure the cut off - but yours is dangerously low right now.
Saying this as you have time to correct it. Every one else here gave you great info to read up on.
None of us are doctors, just fellow thyroid patients, but our collective experience is invaluable for thousands who the healthcare system has failed in some way or another.
No thyroid hormone replacement works well until your core strength vitamin and minerals are up and maintained - and everywhere I researched suggested ferritin needs to be at least over 70 for any thyroid hormone replacement to work well.
Your ferritin needs immediate attention - and should have been investigated before supplementing anything - has this happened - as I would have thought an iron infusion a sensible first option - just to improve immediately this very low ferritin reading. ?
The NHS guidelines suggest a reading under 30 needs further investigation - please make an appointment to see a doctor - regarding same - and get the most appropriate treatment - on the NHS - ferritin takes ages to build - just taking supplements at your own cost.
I now aim for a ferritin at around 100 - folate 20 - active B12 125 ( serym B12 500++ ) and I can't see vitamin D which I aim to maintain at 125.
Thank you.. I'm not sure why the ferritin levels haven't been addressed.. I'm vegetarian too (this is down to "religious" reasons as I've never eaten meat) so this doesn't help. I may ask the GP about this first and possibly see if injections can be administered. Do you think this may increase TSH and T4?
I'm disappointed that the GP has not addressed this first. I guess it's been in "range" that they feel they didn't need to.. It's always actually been quite low but I thought they'd let me know if I needed supplements/ tablets etc
Annoyed at myself too that I should've highlighted this also
Maybe you need to see a different doctor - the link details about a ferritin especially when under 30 - let alone trying to conceive - let alone taking any form of thyroid hormone replacement -
Good thyroid function needs a good core strength of vitamins and minerals which are the cornerstones of your health and well being - and everything is built up one brick at a time - just like a building and you need a good strong foundation of the core base elements of ferritin, folate, B12 and vitamin D.
Peennieannie, thank you.. this helps along with everyone else's input and suggestions. I'm so glad I asked the question otherwise I don't think I would've thought about addressing the low levels of ferritin etc..
I wouldn't worry about the biotin if I were you because as your prenatal contains iron, you probably aren't absorbing anything else. Iron blocks absorption of most things and should be taken at least two hours away from everything else, except vit C - which is essential to absorb the iron.
Your TSH is high because your FT4 - and more than likely your FT3 - is low. The TSH is telling the thyroid that it absolutely needs to make more hormone. But it's not that TSH itself that affects conception, it's the low thyroid hormones - especially T4, because that's the major one that crosses the blood/placenta barrier. They are so wrong to put all the emphasis on the TSH because it's not a very reliable test, and yours seem extremely high in comparison to your FT4 - which is too low, but not that low - if you see what I mean.
Do you always have the blood draw for your tests at the same time of day? Because TSH vary throughout the day and is highest before 9 am, and lowest around midday. But, in any case, the only way to bring the TSH down is to take thyroid hormone replacement - levo, etc. You are very hypo and it's a pity it wasn't picked up on some time ago, because you've obviously been hypo for quite some time.
Hi Greygoose, thanks for your reply.. I haven't had many blood tests, but usually do get them done in the morning..I didn't need to have fasting bloods done, but I did to keep it consistent with others I had done in the past (maybe once a year). Do you think if my low ferritin gets addressed that it may help with the Thyroid tests without having to supplement with Levo?
No, I don't. Low ferritin doesn't cause high TSH. If anything it lowers it - artificially. You are hypo and the only thing that can replace a hormone is a hormone, not any sort of nutrient.
Also, we advise a fasting blood test because food and drink can affect TSH levels, making them falsely low. So, if you're having TSH tested it's always best to fast over-night and have your breakfast after the blood draw. Doctors only tend to look at the TSH because they don't understand anything else, so you need it as high as you can get it. Not only for diagnosis but for dosing, too.
Levo is not a supplement. It's Thyroid Hormone Replacement. Calling it a supplement suggests that it adds to/tops up what you already have. But it lowers your TSH - obviously, that's what it's meant to do - and as the thyroid cannot produce hormone without the stimulation of the TSH, it stops hormone production. Which is why being on a low dose can make things worse, rather than better.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking any iron supplements stop 5-7 days before testing
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