Hi, first time here and struggling to understand hypothyroidism, after months of being poorly with fatigue, virus after virus, oral thrush and swollen throat for 14 weeks as well as weight gain doctors finally did bloods and these were the results
TSH 10.60mU/L (0.35-4.94)
Free T4 13 pmol/L (9.0- 20.0)
I’ve been put on Levothyroxine 25mg daily I’ve been taking them for 3 weeks but still feel the same. Bloods will be done again in a couple of weeks. Is it normal to feel like this?
Thanks for any help/advice
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Taytay68
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25mcg is a starter dose for children, the elderly and those with a heart condition. Normal starter dose is 50mcg with increases of 25mcg every 6-8 weeks until you reach your optimal dose.
Another way of starting Levo is to prescribe by bodyweight, i.e. 1.6 micrograms per kilogram of bodyweight per day to start then adjust dose as necessary.
So it looks like your GP could have started you on a higher dose.
Regardless of what dose you start on, taking Levo is not an instant fix, it doesn't work like paracetamol for a headache. We have to build up gradually. It's taken us a long time to reach the stage where we are diagnosed and we are replacing missing hormones and have to build them up slowly, retesting and increasing every 6-8 weeks as mentioned. It takes up to 6 weeks to feel the benefit of starting Levo or a change in dose, and it can take many months to reach our optimal dose. Unfortunately, patience is key when treating hypothyroidism.
As you have been on Levo for 3 weeks, please make sure you are retested 6 weeks after starting, get the results of your blood tests either via online access or asking the receptionist at your surgery for a print out of your results.
The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their reference ranges. So always get your results (with ranges) and keep a record, it will become invaluable in the future. Make a spreadsheet or keep a record somehow with date, test, result, reference range, dose of Levo, how you feel and any change in dose based on the result.
I expect you will have your dose raised by 25mcg after you are retested, this is the normal increment, we can't go any faster. Ensure you are retested every 6-8 weeks until your levels stabilise and your symptoms abate.
Always advised here, when having thyroid tests:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.
It's also a good idea to get nutrients tested, these need to be optimal for thyroid hormone to work properly, and low levels bring their own problems. So ask if you can have the following tested:
Vit D
B12
Folate
Ferritin
If your GP wont do them I suggest you do them yourself with one of our recommended private labs. Feel free to post results/ranges for members to comment and suggest where supplements may be helpful.
Wow Seasidesusie! Thank you so very much for all this information, I won’t pretend I am completely lost mentally and emotionally and physically exhausted after being told my diagnosis. Doctor explained nothing other then to take the pill in the morning and to book for more bloods. I felt as if all my symptoms were just brushed under the carpet. I had to call the surgery again a couple of days later to get a sick note because I physically couldn’t get out of bed to got to work, and I even felt stupid asking for it. But your advice has helped a lot and given me a starting point. Again Thank you.
Welcome to the forum Taytay68, you will get lots of support & valuable information & advice from members. I’ve learned so much from others and feel so much better with thyroid medication & key vitamins (ferritin, B12, folate, vit D) higher in range. I test my thyroid levels & key vitamins privately (as GP wouldn’t test T3), post results on this forum & seek advice from others (more knowledgeable than I). Going gluten free has also eased many of my symptoms.Keep posting if you need any advice or support; we are here for each other!
Welcome to the forum. Visit regularly for both moral and practical support.
I would say trick number one is... find a GP who actually understands Hashimoto’s/thyroid conditions and that’s half the battle one. Change if your GP is unsupportive.
Keep us updated and be prepared for a few battles with the NHS! And remember that thyroid affects your hormones and can cause anxiety/depression too. So if you’re feeling down, don’t be too disheartened. We’ve all been there and it’ll get better with the right support and treatment. Would go up to 50 Levo asap! With a TSH of 10 I would think 25 levo is nowhere near enough 😆
Thank you Hashifedup, already learnt more from this page in a few hours then I have in the last 3 weeks from GP, and I think you might be right I’ll need to find a gp willing to help, and I know it’s early days but already I feel dismissed by them. She actually gave me the impression I’d feel better after taking the pill for a couple of weeks, hence me feeling fed up when I don’t actually feel any different at all... infact I feel worse! ... I’m glad I’ve found this page though,
I think you are at the “hang on in there” phase before your dose can be adjusted in 3 weeks. The problem is that they don’t tell us we will often feel worse before we start to feel better. Like you, I have learned nothing useful whatsoever about my condition from the medical profession. You’re in the right place to learn and ultimately, to take control. Unfortunately the medical profession is a real mixed bag on treating hypo, so we need to clue ourselves up and trust ourselves more than we trust them with it, I think. I learned that the hard way!
Thank you Lotika, that sounds about right, I just need to learn to give myself more time and to stop worrying so much.. I guess I just want to feel normal again but it’s actually been so long since I felt normal that I’m just letting myself get overwhelmed... I’m reminding myself it’s one step at a time,
Yes, I can understand that and suffer from the same impatience! One of the things I am currently having a fun time with is that it has been so long since I was “normal Lotika” that I have rather forgotten what that looks like. Since I started on some different medication I have been getting some of the bad parts of “normal me” as well as the good parts. I’d forgotten about the disadvantages (in my case, being a bit ADD and heavy painful periods) so it is quite funny to be seeing those again and thinking oh, yes, *that too*. Still, it is a good thing and I hope you get there soon
Here is a link to Thyroid uk, read and learn all you can. Bit by bit, 😊 it can be very overwhelming especially when struggling with cognitive issues that usually come with thyroid problems. And ask, ask, ask! thyroiduk.org
You are legally entitled to printed copies of your blood test results and ranges.
But .....The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results.
If not already got access .....Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Just testing TSH and Ft4 is completely inadequate, especially going forward, now you are starting on levothyroxine
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
About 90% of primary hypothyroidism is caused by autoimmune thyroid disease, so it’s likely
Ask GP to test vitamin levels and thyroid antibodies at next test, if not been tested yet
Bloods should be retested 6-8 weeks after each dose or brand change in levothyroxine
Which brand of levothyroxine are you currently taking
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)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
As others have said standard starter dose of levothyroxine is 50mcg
Dose is increased slowly upwards in 25mcg steps until TSH is under 2. Most people when adequately treated will have TSH well under one.
Most important results are ALWAYS Ft3 followed by Ft4
Guidelines on dose by weight is that you are likely to need to be on something around 1.6mcg per kilo of your weight. Unless very petite that’s likely to be at least 100mcg daily.
Bloods are retested 6-8 weeks after each dose increase
Thank you slowdragon, I am slowly getting through all this information that you guys are posting for me... it’s all a bit overwhelming at the mint but I know I’ll get it all sorted out in my head once my energy levels start to come back,
Hi can someone help me to understand my blood results please thank you so much x
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