I have been diagnosed with hypothyroidism back in May
Was put on 50mg of levothyroxine, which I started taking but stopped as It caused me weight gain and was not making me feel any better...
I am 5ft8 and weigh 8stone 12 and 42 years old
My problem is that my periods have now become erratic and often stop for a while
Is this anything to do with hypothyroidism?
I am desperate to have another child and was wondering if anyone else has any experience with this problem
Thanks
In your post/thread of 3 months ago you mentioned you were on 25mcg - so has your dose been increased ? Have you been re-tested since then. Your TSH was too high and the FT4 too low at that point and could be linked to
your current problem with irregular periods.
Yes the dr increased it but I was to scared of putting weight on so stopped the treatment
I have suffered with bulimia and am currently in recovery...
But if I feel like I’m out of control I will and have relapse 😥
Im going for a blood test today so will post the results when I have them
Feeling very frustrated and had enough of feeling poorly
Levothyroxine does not make you put on weight unless you're under medicated so basically remain hypothyroid. But then it's not because of the drug itself but the fact that your metabolism remains low.
I repeat: if you have hypothyroidism you'll most likely need life-long thyroid hormone replacement, so going off the meds is NOT an option - especially not if you're trying to get pregnant.
What is your exact thyroid diagnosis/why were you put on levothyroxine in the first place?
I was diagnosed with hypothyroidism
My last results from a month ago were
TSH 7.720
T4 10
B12 403
Ferritin 128
I don't know if you were still on levo back then, but your TSH is way too high (it should ideally be around 1 or lower when optimally treated on levo), and your FT4 very low meaning you are hypothyroid and need to go back on levo or raise your previous dose.
Usually, doctors will try to determine the cause of your hypothyroidism; in about 90% of cases, it's caused by autoimmunity (confirmed by presence of antibodies).
I hope others will repeat the same thing I've been saying: if hypothyroid, you CANNOT go off your meds, or you'll end up hypothyroid again. Going off meds is NOT an option. You need to try to optimise your FTs on levo before considering alternative options (such as the addition of T3). Your labs show you were and still are very hypothyroid and that is NOT going to change unless you back on levothyroxine!!!
This was the blood results from 3 weeks ago
I haven’t taken my meds since June
So I think I will have to go back on them and hope that it works...
As others have said, you will be very unlikely to fall pregnant unless your TSH is at least below 2.5.
I'm not saying this to scare you into anything, but if you were to fall pregnant with your TSH as it is, you would have a very high likelihood of miscarriage, or an increased risk of birth defects.
Yes, you most definitely should go back on levo.
As pointed out, the goal when on levothyroxine is to get your FT4 levels close to the upper normal limit (so, 20-24, or 1.4-1.8 depending on the lab's reference ranges and measuring units), and your FT3 levels at least halfway through range. The TSH is less important once on medication, and the levo dose should not be based on it, but optimal free T3 and T4 on levothyroxine often put it around 0.5-1.0 (but sometimes, the TSH drops below range on levo and that does NOT mean you're overmedicated). In any case, the TSH should not be above 2.
You need to go back on 50 mcg of levo, then retest after 6-8 weeks to see where that puts your free Ts. Based on your previous experiences, I'd say you're going to need to raise levo to 0.75 then retest in another 6-8 weeks. You should then add 0.25 of levo every 6-8 weeks until your FTs are optimal and your symptoms gone, regardless of what happens to your TSH.
Remember, getting pregnant can be difficult or even impossible if hypothyroid, and even if you managed to get pregnant now it could be difficult to carry a baby to term as long as you remain untreated/hypothyroid. I'd recommend you work on optimising your thyroid treatment before trying to conceive.
Thank you for your advice x
I am also trying to figure out where your eating disorder fits into all this...I have no idea how bulimia affects your metabolism, but would imagine it could cause your body to slow down metabolism in an attempt to preserve energy.
Has your doctor made any connection between your thyroid condition and your eating disorder? What was the reason your thyroid was tested?
T3 drops as a result of consuming too few calories. It's production was found to drop by as much as 60% when a study put people on a 400 calorie/day fast, and dropped as much as 40% when people consumed just 1200 calories per day. TSH and T4 generally remained unchanged, but this was only a short term study, so can't say what happens long term.
Ok, thanks, interesting!
Given the OP's TSH and FT4 readings, I think it's safe then to say they are indicate of primary hypothyroidism not related to her eating disorder.
Is there any way you could get your doctor to order an antibody (anti-TPO) and anti-thyroglobuline test? That would show if you have Hashimoto's disease aka autoimmune hypothyroidism. That's the most common cause of the disease.
I will ask .... but my dr is not the most helpful of people 🙄
I know what you mean, many doctors are like that, but from the sound of it you are not likely to recover if he does not even know your TSH should not be above 7...plus wants to leave you like that for another three months, on a starting dose of levo.
Ok, so I am trying to figure this out.
Didn't your doctor react when s/he saw those results, as they scream hypo?
Have you told your doctor you've gone off levo?
Cooper27 has given great advice re pregnancy.
My dr wasn’t that alarmed
He just said let’s try Levo and I’ll see you in 3 months for a repeat blood test
He has no idea I stopped the meds...
Yes low body weight probably doesn’t help
But at my lowest I was 7stone 5
So I have made progress all be it slow
Then your doctor does not know anything about thyroid hormone replacement.
You should be retested every 6-8 weeks until you've found your optimal replacement dose. Three months is too long. No wonder you felt bad.
Being under weight is frequently a cause of periods stopping or being irregular
healthline.com/health/bulim...
Important to get folate, ferritin, vitamin D and B12 levels tested and optimal
Yes, irregular or absent periods are common in hypothyroidism, as is infertility.
If you have been diagnosed with hypothyroidism, I guess the diagnosis was based on labs? Do you have any to post here (with reference ranges)?
In most cases, hypothyroidism requires life-long thyroid hormone replacement, in order to make sure your body gets the thyroid hormone it's no longer capable of producing itself, so going off thyroid medication is generally a BAD idea.
If you did not feel better on levothyroxine, it's probably because you were kept on a starting dose for too long. Usually, patients under 50 are put on 50 mcg as a STARTING dose, and the dose is then adjusted every 6-8 weeks until your TSH Is ideally around 1 or slightly below.
A common replacement dose for levo is 100-150 mcg/day, with some people needing 200 mcg or more daily, so my guess is you were never optimised on levothyroxine.
If you want to become pregnant, and carry a baby to term, you need to make sure your thyroid hormone levels are optimised first.
And where is your doctor in all this? What did s/he say when you went of thyroid meds? Are you scheduled to have follow-up?
Important for TSH to be under 2.5 before TTC
Are you currently on any Levothyroxine?
What are your most recent blood test results
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
Ask GP to test vitamin levels
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, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.
So it's important to get TPO and TG thyroid antibodies tested at least once .
Link about thyroid blood tests
thyroiduk.org/tuk/testing/t...
Link about antibodies and Hashimoto's
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
List of hypothyroid symptoms
thyroiduk.org.uk/tuk/about_...
Standard starter dose is 50mcgs Levothyroxine
Bloods should be retested 6-8 weeks after each dose increase
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
TTC
verywellhealth.com/infertil...
Pregnancy guidelines
thyroiduk.org.uk/tuk/about_...
gp-update.co.uk/files/docs/...
thyroiduk.org.uk/tuk/guidel...
See pages 7&8
Also, many hypothyroid women need more levothyroxine when pregnant. That's because before the baby can make its own thyroid hormone, during the second trimester, the foetus has to get all the thyroid hormone from the mother. The body makes sure the foetus gets what it needs, often leaving the mother under medicated if the levothyroxine dose is not raised.
Amenorrhea is very commonly associated with eating disorders - if you suffer/are recovering from bulimia, it's possible this is also the cause. Essentially if our body is being put under a lot of stress, it figures it's not a safe time to have a baby, and it shuts down reproduction.
Although you're afraid of putting on weight, you really need to focus on ensuring your body is suitably cared for. It needs enough nutrients, calories and the space to feel safe to reproduce, and then your periods will hopefully return as a side effect.
What others say about being on the right medication will also be important. The stress of trying to get by on insufficient thyroid hormones is just compounding on what it's already going through.
Levothyroxine and periods
Periods have stopped with Hashi's
Endo stopped my thyroid medication
Bowel seems to have stopped
Stopped taking my medication... cold turkey...
