Feeling so down TTC

[mitchellrose54]

Had my levels checked in January and they were TSH 4.54 TSH 13. I'm TTC so GP advice is for my TSH to be at optimum of 2.5. I increased my dose from 50mg to 75mg. Just got my levels back and they are basically the same if not worse TSH is 4.79 & T4 15. To say I'm gutted is an understatement. Seriously feel like there is no light at end of tunnel. Can anyone offer any advice. Why might this have happened? Feeling so down 😟

[SlowDragon Administrator]

75mcg is only one step up from starter dose

See/contact GP for next 25mcg dose increase

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Bloods should be retested 6-8 weeks after each dose increase

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

Have you had antibodies tested? Do you have Hashimoto’s?

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Improving nutrients improves conversion

healthunlocked.com/thyroidu...

Even if we don’t start on full replacement dose, many people need to increase dose upwards slowly until on full replacement dose

NICE guidelines of full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

[SlowDragon Administrator]

Post from 3 months ago

healthunlocked.com/thyroidu...

Did you get vitamin results and antibodies tested?

Vitamin levels need to be OPTIMAL

you are legally entitled to copies of results and ranges

[mitchellrose54 in reply to SlowDragon]

Hi yes I think you are right I think my initial dose was most likely for fuel o I'm not sure why that was perhaps my doctor just heard on the side of caution trying not to dwell on that part too much because I won't change where I am right now now I've been up to 100 mg which I'll start taking from tomorrow I just wonder how long it will take for things to settle down because 75mg (and the extra 25mg increase from 50mg) clearly did absolutely nothing

[SlowDragon Administrator in reply to mitchellrose54]

If you weigh yourself in kilo and multiply by 1.6 that’s the likely dose you may need

thecalculatorsite.com/conve...

So, if for example you weigh 66kg x 1.6 = 105mcg per day ...so 100mcg may be enough...or might need extra 12.5mcg (half a 25mcg tablet) 3 or 4 times a week

Some people need more if gut absorption is poor or especially if lactose intolerant

Some need a bit less

Obviously BEFORE TTC you need good vitamin levels

What vitamin supplements are you currently taking?

[mitchellrose54 in reply to SlowDragon]

I'm taking TTC vitamins.

Thanks will take a look at that calculator now

[mitchellrose54 in reply to mitchellrose54]

Oh gosh yes at that, mine is saying more that 100mg. Where is this info from? I'm wondering whether to contact my Dr

[SlowDragon Administrator in reply to mitchellrose54]

You can’t increase more than 25mcg at a time

[SlowDragon Administrator in reply to mitchellrose54]

See links in my previous reply above on details of guidelines by weight

Strongly recommend getting vitamin D tested at least

vitamindtest.org.uk

[SlowDragon Administrator in reply to mitchellrose54]

So you are taking a multivitamin?

Which one?

You need actual results of vitamin tests

Or test yourself

And thyroid antibodies obviously

[humanbean]

A TSH of 2.5 isn't optimum for conceiving. It's a maximum!

[Arigna in reply to humanbean]

I agree, I saw a couple of fertility doctors before and they both told me it should be between 1 and 2 when you conceive.

[mitchellrose54]

Oh bloody hell so I'm way out my cycles still aren't right so I feel like a million miles of conceiving.

[Catlady101]

Hi Mitchellrose54,

Didn’t want to read and run. I’m new on here but found this wonderful forum because I’m searching for answers much like you. I got diagnosed in August last year after tests due to not conceiving. It does feel like a long lonely road at times when all you want is to have the baby you so desperately need. I just wanted to say you’re not alone, I completely relate to how you feel. Sending you lots of love x

[humanbean]

You might find this link of interest - it discusses levels of TSH in healthy people with no known thyroid disease :

healthunlocked.com/thyroidu...

One thing you should be aware of is that being hypothyroid reduces stomach acid in most sufferers and so digestion and gut health deteriorates. We usually end up with poor levels of nutrients, particularly iron, ferritin (iron stores), vitamin B12, folate and vitamin D. You would improve your chances of conceiving if you got your nutrient levels optimised (not just in range) and you would also maximise the health of any offspring you have. Please note that optimum is different for different nutrients. Some need to be mid-range, some need to be upper half of the range and some need to be top of range. If you got your nutrients measured you could post the results and reference ranges in a new post and ask for feedback.

If you want optimum levels of thyroid hormones to help you to conceive then you will probably have to either change your doctor (because your current one seems not to understand or care that a TSH high in range is not optimal for anyone) or you will have to start self-medicating. Finding a doctor who is compassionate and knowledgeable in terms of thyroid treatment is very, very difficult, sadly.

[Batty1]

Sorry your feeling bad, what is TTC?

[helvella Administrator in reply to Batty1]

As very often, see my abbreviations and acronyms document:

dropbox.com/s/2423slilh0or6...

TTC = Trying To Conceive

[Batty1 in reply to helvella]

Oh...lol I would never have guessed that.

[Nbrusman]

I'm sure most people would disagree with my strategy but, I feel better than I have felt in a long time so, I'm sticking with it!

I was diagnosed 2 years ago at age 39. I was healthy, ate a healthy diet, exercised 5 days a week. Out of no where my hair started thinning, my energy was low, I had random body soreness, brain fog, and I gained 20 lbs in a year! It was not a surprise as I have many family members who also have hypothyroidism caused by hashimoto's disease. I started seeing an endocrinologist immediately. I literally tried every medication offered by prescription with no luck. Each medication left me feeling worse than before I started seeing a doctor!My numbers would be optimal but, I would still feel awful. I tried everything from Levothyroxine to Nature Thyroid. Tirosint was the last medication that I tried that gave me terrible headaches. My edo finally said that their weren't anymore medications to try and that I just wasn't a candidate for the typical treatments. She referred me to a different doctor who dealt with hormone therapy. I said enough is enough! I started researching and reading other people's stories and opinions (stop the thyroid madness has a lot of good information). Long story short, I started treating myself. I ordered Thyrogold online. Thyrogold was started by a doctor and the website also has a lot of information on it as well. You can also call or email them with any questions. I started with the smallest dose and reevaluated my symptoms and basil temperature every 2-4 weeks until I felt normal again(increasing medication when I didn't). And here I am today symptom free and no side effects. No, I dont know what my numbers are today but, I honestly don't care. When my numbers were "optimal" I still felt like crap and isn't that why we see a doctor to begin with.... to feel better?! I do know that not everyone is a candidate for desiccated medication, if you have high blood pressure or heart problems you shouldn't take it.

Again, I'm not a doctor. This is what worked for me and lots of other people like me. Do your research and be your own advocate. Good luck to your on your health journey!

[tortuga78]

Don't give up. You can do it! Like previous posters have said, get your Vit D & Iron optimal. Try to convince your doc to increase your dose to have your TSH in the low range of normal, with FT3 & FT4 at mid to high range. Once your thyroid stabilizes, talk to your doc about possibly adding Letrozole to help with consistent ovulation. I struggled TTC with my 2nd baby, but I had a doc that worked with me to increase my dose of Naturethroid + T3 until I was optimal. My TSH was nearly 0 when I conceived at 40 years old! My FT3 was 4.0 and FT4 was 1.2. I used Letrozole for 5 months. My doc was hesitant at first to let my TSH get so low bc he feared I would be hyper. So each time we increased my dose he would check my BP, HR, knee reflexes, heart palpitations,and hands for trembling. I never showed any signs of hyper, so we continued dosage increases. You have to get the doc to look at you, not just your lab results. Best of luck!

[mitchellrose54]

My latest results show my TSH is 1.63! Finally feeling bit. More hopeful!!