I have had 3 tests that have come back boarderline thyroid. 1 was over a year ago and I’m not sure of level. Most recent TSH was 4.63 and in jan was TSH 4.35
My T4 level normal
I had a pregnancy baby diagnosed Down syndrome
I feel tired a lot and have gained weight can’t lose despite eating nothing and exercise despite making me feel like death due to low energy, brittle nails, brain fog, pins and needles in arms and legs, hair loss, iBS constipation heavy painful periods thin eyebrows hair loss in shower etc etc etc honestly been back and forth to the gp so many times and feel like I’m banging my head against a wall
doctor said not to worry even though we were desperate to try for another baby but feel too anxious 😬
Doctor reluctantly prepared to prescribe.25 thyroxine for 2 month then have more bloods and check levels
Is this the best thing how do I get proper diagnosis or should I be asking for different tests?
something isn’t right and keep getting told it’s anxiety and overweight feel fobbed off
I’m sick of fighting to get answers and having to do own research 🧐
also have pelvic pain and low sex drive and struggle to sleep
keep reading different levels treated different areas of the country just didn’t think I’d have to self diagnose and feels wrong
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Greenscarf9
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and offer recommendations better. Click on your image icon to start.
If your GP is willing to prescribe levothyroxine its probably best to accept that. The recommended TSH for conception is 2.5 so it will help you going forward for that and of course your current symptoms. The fact that he is offering to prescribe is a diagnosis by most standards.
Diagnosis and treatment usually start after 2 consecutive TSH readings above the reference range. Do you have the reference range for your lab? They do vary from lab to lab.
Also, as soon as you are pregnant you should get a 25mcg dose increase as the body requires more thyroid hormone during pregnancy.
Have you had your thyroid antibodies tested to check if your hypothyroidism is autoimmune? Your GP can check one type TPO but you can also test privately for Thyroglobulin antibodies.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. No charge for blood draw in clinic. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private postal testing early Monday or Tuesday morning.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Thanks so much for your reply really useful and actually feel listened to honestly feel like the GP thinks I’m making stuff up!
I think the reference range is 0.5-4.5 for my lab
I don’t know if I dare to try get pregnant after what happened last year with the down syndrome diagnosis and losing the baby I’m worried it’s all interconnected and could happen again. Is it safe to have a baby when thyroid issues?
GP said antibodies test was ok and T4 levels were normal. She also told me that hair loss and pins and needles were not related to underactive thyroid so losing trust fast. I’m not sure what autoimmune is she did not refer to that….is it worth getting thyroglobulin test private? What would this show?
I had a full blood test last time to see if anything underlying, would that show if I had any vitamin deficiency or would it be a different test? I will ask for a copy of my latest result so I can see what is recorded and can post.
I’ll have a good read of the links you sent after work
Thanks so much again it’s really appreciated and reassuring to have someone respond and not act like I’m crazy
It's perfectly safe to have a baby with thyroid issues. Get your dose increase as soon as you know you're pregnant and you will likely be referred to an Endocrinologist.
If you have autoimmune hypo then you should trial a strictly gluten free diet. Its definitely worth knowing.
Get the copy of your results and post them here.
So one of your tests was above range and the other not. If GP is offering treatment then you should grab that especially as you want to have a baby.
Sad to say the GP profession is short on knowledge about the thyroid and worse, they don't like being "informed" by knowledgeable patients. Starting on a tiny dose of thyroxine is pointless unless you're over 60 but even so, there should be a retest to see what effect it's having. It seems that once they've agreed to give you any, they feel that will do it which of course is wrong and if you know it's not helping you have to ask for more, always daunting because they will throw medical terms at you or argue and who wants that when you're already feeling rough. I've been trying to get help since 2015, always refused as "your results are within normal range" despite my T4 being right at the bottom and having lots of symptoms. None of those I've seen including consultants or their stooges, have known what central hypothyroidism is or pretend they do and bat you away yetifit rght into the definition. Last week I had an annual review and myT4 has fallen past the lower level. Did they call me in? Nope, it says retest in 8 weeks 🙄I guess I might get better by then lol. A lot of the people on this forum have had to go down the route of private testing and sourcing their own Levo or T3. It's really not acceptable but sadly sometimes it's he only way.
I just wanted to add, yea it is so long as your thyroid abnormalities is being addressed. As others having pointed out, TSH needs to be 2.5 first trimester, and doing a google search, plenty will also state at preconception you are looking at around 0.4-2.5 as the demand on the thyroid increases significantly as soon as you are pregnant.
Keep at it, and listen to the folk on her as well as your own body and good luck. It’s pretty good that you got any treatment all things considering 🫶🏽
Do you know if they tested your antibodies? I just wanted to add I was borderline - tested after trying to give blood and unable to as I was anaemic. They started me on thyroxine because I had antibodies and my GP said my symptoms (which was purely that I was a bit fatigued) would only get worse.
Also, having done a calorie controlled diet a couple of years ago, I discovered that if you don’t eat enough, you won’t lose weight. I had to eat a bit more to kick start my weight loss again after a plateau and not quite eating enough. I was weighing myself (and my food!) daily. I know it doesn’t work for everyone, but it did for me and it was a real eye opener when eating more helped my loss start again.
Wishing you the best of luck on getting your health sorted.
Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...
As your B12 is low are you a vegan or vegetarian?
The range for B12 is too wide and cut off point too low.
If you do then you should discuss this with your doctor for further tests for Pernicious Anaemia.
If not, then start with a methyl B12 sublingual spray or lozenge for a week, then add a good B complex. Once you run out of the separate B12 just continue with the B complex.
This B complex has all the right vitamins at a not unreasonable cost for 90 days supply(also contains folate). Once B12 is good (over 500) you can stop the stand alone B12 and just continue with the B complex. amazon.co.uk/Liposomal-Soft...
Bringing your B12 level up will help your energy levels, also help your thyroid hormone to work better.
I look at this and just want to bang my head against a wall. It already says that your TSH is above range and your T4 is vegetating at the very bottom. I really would like to see where your T3 is situated. As far as I'm concerned this should absolutely be treated and I don't understand the doctor's hesitation. It also looks like only TPO was tested. That's not enough. My TPO is completely normal (always has been) and my TgAb is elevated, which indicates autoimmunity. Quite frankly, in my opinion, your doctor is doing a half-ass job. You need a full thyroid panel followed by appropriate treatment. And you need to keep on top of iron, D, folate and B12 (at a minimum) if you want to insure conception, a healthy baby (as much as possible) and a healthy mom. Keep fighting for that. Best wishes.
First of all, I am sorry for your loss. That must have been devastating.
I think I would go back to the surgery, hopefully see another GP, explain that you want another baby and are desperate to be fit and well so that you dont go through the whole thing again. They will surely understand that. Ask for a full blood profile, including a full thyroid test, so that you can be fit and well to be a mother again, and that you need their help to do that.
I do hope you get the help you need. Sending a hug.
Maybe worthwhile to know that there are trimester specifics ranges for TSH (ergo presumably preconception) apps.nhslothian.scot/refhel...
Many patients are prescribed thyroxine preconception for ivf for example too signifying the importance of TSH in pregnancy with or without thyroid related disease.
thanks again everyone taken first tablet this morning so hoping I start to feel a bit better. What am I hoping to see on my blood tests in two months and how can I ensure treatment continues if it is helping x
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
To feel well most people need their TSH at or just under 1. Many GPs are satisfied when TSH is within the range so it can be a battle to persuade them for an increase.
25mcgs is just a starter dose so you may not feel hugely different and sometimes as it is a lot less that your own thyroid should produce some people can feel worse until they get to higher doses.
As we have to leave 6-8 weeks between small (12.5 - 25mcg) dose increases it can obviously take quite some months to get to nearer your optimal level.
You may have to push your GP for increases, find one at your practice that is open minded and read posts here to learn more that will give you confidence challenging your GP.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo just prior to blood draw can show a falsley elevated result and your GP/Endo might change your dose incorrectly as a result.
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