Nearly three weeks ago I was diagnosed as being Hypothyroid after paying to have a private blood test and seeing a private GP as couldn’t get anywhere with the NHS. I’m on 50 mg of Levothyroxine and can see very slight improvements but after a reasonable day yesterday today I feel absolutely terrible. Does anyone else experience this please? I don’t seem to be able to get any consistency in terms of improvement. My results were TSH 3.94 - (range 0.27 - 4.2 mIU/L), Free T4 12.85 (range 12 - 22 pool/L) and Free T3 4.2 (range 3.1 - 6.8 pmol/L). I feel so poorly sometimes that I feel my results should be worse than this. My TSH has been up 5. Any support as to if I will ever see a real improvement would be appreciated. I’m beginning to despair.
Feeling Good One Day and Terrible the Next - Thyroid UK
Feeling Good One Day and Terrible the Next
Hi Waltzer
3 weeks is a drop in the ocean as far as starting treatment for hypothyroidism is concerned. It takes up to 6 weeks from starting Levo, and after any dose increase, for the full effects to be felt, so it is very early days yet. It can take months to reach your optimal dose and feel properly well. Make sure you retest 6 weeks after starting Levo, increase by 25mcg if necessary, and retest/increase every 6-8 weeks thereafter until your levels are where they need to be for you to feel well.
When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.
When booking thyroid tests, we advise:
* Book the first appointment of the morning. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, leave off Levo for 24 hours before blood draw, if taking NDT or T3 then leave that off for 8-12 hours. 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 will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
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.
If you haven't already done so, when you next test I'd include:
Vit D
B12
Folate
Ferritin
All these need to be at optimal levels for thyroid hormone to work properly.
If you haven't tested thyroid antibodies, I'd include those too.
You can get everything done in one test bundle with one of our recommended labs, either by fingerprick test of venous blood draw if preferred at extra cost.
Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func... You can use code THYROIDUK for a 10% discount on any test not on special offer.
From Friday 26th to Monday 29th April they have 20% discount across the board.
or
Blue Horizon Thyroid Check PLUS ELEVEN bluehorizonmedicals.co.uk/t...
Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:
For the fingerprick test, Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Serum B12. Medichecks does Active B12.
Serum B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Serum B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)
Thank you for that. I’ve spent a long time on the forum recently and have made numerous notes ready for my next blood test. It’s comforting reading that other people understand exactly what you’re going through.
Hi Waltzer , just wanted to let you know you’re in the right place for advice and I’m sure one of the admins will be along soon to help with your question. I’m one of the many who have found help and reassurance on here that we’re not alone in this Thyroid struggle. Good luck!
Thank you - the help I’m receiving is like a comfort blanket. I’ve never suffered like this ever before. I realise now I’ve had it a long time.
The admins and others posting on here are wonderful! I hope your suffering is over soon now you are here.
I was diagnosed at 6 months back in the 60’s when common sense prevailed and all were treated by symptoms and with empathy, so I’ve never had to question my treatment as my health has always been good. Until finding this forum I didn’t realise how badly people were being treated by the medical community! 😱🤬
On retirement of my last understanding doctor I joined a ‘register’ and my descent into hell (lowered meds) began. Now I’ve found this forum I know I have a voice and can stand up for myself! That feeling alone can raise your spirits!
It takes minimum of 6-8 weeks for each dose to have full effect. It's common to start to see slight improvement. Then as you start to feel better and do a bit more, can start to notice you need next dose increase
Bloods should be retested 6-8 weeks after each dose increase
Aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards, retesting 6-8 weeks later each time. This continues until TSH is under 2 and FT4 in top third of range and FT3 at least half way in range
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
Have you had TPO and TG thyroid antibodies tested?
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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
Most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine. 50mcg is only the standard starter dose
Hi thanks for your prompt reply. My ferritin and vitamin D were both low. I’ve not had TPO and TG antibodies done but have a made a note to ask at my next appointment with GP. Thanks for your help - it’s really tough going sometimes.
How low were vitamin D and ferritin and what has doctor prescribed to improve these?
Vitamin D needs to be at least around 80nmol and around 100nmol may be better
Ferritin at least half way in range
Important to test B12 and folate too. Always get actual results and ranges
Vitamins are frequently low, this is as direct result of being hypothyroid
Low vitamins are especially likely if antibodies are raised
Vitamin D was 58 nmol/L. Ferritin 92.8 ug/L (range 20.0 - 260.0). I’ve been given nothing to take for either. It’s been an uphill struggle and I’ve done most of the work
myself because I felt so poorly. B12 was 591 ng/L and folate 14.1 ug/L.
I’ve been trying to carry on as normal -
should I be trying to rest more?
Thanks for your help.
Some steady gentle exercise like a short walk is ok. But hard exercise like the gym, running or HIIT will lower FT3 too much until you are on higher dose of Levothyroxine
Self supplementing vitamin D is a good idea
Many find Vitamin D mouth spray by Better You is good as avoids poor gut function of hypothyroidism
Retesting vitamin D levels in 2-3 months via
Read as much as possible on here.
Keep good record of how you feel at each dose and always get actual results and ranges on all blood tests
A spreadsheet is good way to see how you progress over time
Thanks - that’s great. I do a lot of dancing with my husband and suspect I’ve overdone it. If only drs would help us like this. Thank you.
Perhaps a short dance, but not a long stint, until you start feeling better
Hang on in there! You may still be undertreated or not on current dose long enough for it to have stabilised, or both. You’ve probably always felt better some days than others but when you’re well you can take it in your stride. However when scraping by day to day the natural variations are much more noticeable and probably much bigger. You can get well, I promise.
Hi Waltzer, like yourself I had to get private blood tests and started to take 50mg of Levothyroxine nearly 2 weeks ago. I've learned so much from this forum, very thankful to have found it. I've also had a nasty cold for the last week so have been feeling pretty rubbish until last few days where I've started to feel a lot better. Still very tired by the end of the day, almost like you have a small pot of energy that can be used once a day and need to rest up afterwards! I'm used to being very active and find it hard not to be doing something, luckily I've just got into yoga and other gym classes which are a big help. Good luck with everything and look forward to seeing your updates!
Thanks for your comments. It’s good to be able to share experiences with other people who
have the same issues. What a hideous condition this is.
Might I ask what your day looked like yesterday? Perhaps because you felt reasonable yesterday you did too much?
Bullseye! I think you’ve summed it up very well. I’ve been guilty of trying to carry on as normal
and although retired I lead a busy life. I’ve never encountered anything like this before and the symptoms have been horrendous and I’ve really felt so poorly. The NHS dr told me to have another blood test in six months! I’ve had no real guidance and it’s only through hours and hours of research I’ve found out about this condition. This forum has been very reassuring. I’ve clearly had the condition for a long while but put symptoms down to getting older.
When you feel "better" after feeling crummy, it is easy to do too much. But now that you know, you can reign yourself in for now 
6 months is much, much too long. You may start to feel better but then feel worse again as the HPT axis (hypothalamus, pituitary, thyroid) adjusts to the low starting dose you are on. Don't take it as a sign that the medicine isn't working...just that you are still at the beginning of the process.
My daughter has been ill, and one of the things the doc determined was hypothyroid. I started studying up on it and realized that it was probably why I was feeling miserable too. I have started treatment with NDT (natural desiccated thyroid). Doc kept me on the starting dose so long that my free T3 and free T4 were lower than before I started the medicine! (I am in the US.)
Be sure to look at:
thyroiduk.org.uk/tuk/about_...
There may be things that you don't realize are thyroid. Tick them off, take a copy to doc, keep a copy for you. Jot down each week how each symptom has fared. For example, I find that my weepiness gets better on new dose, then gradually comes back (about the time a dose increase is needed). Even if the doc doesn't listen, at least you will have a better understanding of your symptoms to be able to watch for the need for dosage adjustments in the future.
Thanks for that - I’m getting so much useful information from this forum. It’s reassuring to be able to converse with people who are suffering with thyroid issues and understand what you are going through. I’ve tried to battle on regardless and realise now that’s not possible at the moment. Next blood test in two weeks time and hopefully an increase in dosage.
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