I’m asking for guidance I’m feeling in a bit of desperation at the moment. Roughly 6 months ago my tsh checks had been done as the gp insisted I should not need 300 dose of levothyroxine despite my still having symptoms on this dosage they become more manageable at least. They brought me down to 275 after this and after several rounds of tests. Since then I have had to be referred to gynaecology as I’m having more and more problems with my periods this has been one symptom that has not cleared up since I was diagnosed roughly 6/7 years ago now that and weight gain and fatigue. The problems have become difficult to manage and I’m just exhausted and in so much pain. I’m regularly having to use cocodymol to manage pain from leg, hips, back pain to awful period cramps and heavy bleeding which can go on for much longer than they should be. I’m having periods that somtimes don’t stop between cycles. So my gynaecologist checked did ultra sounds and apart from finding a simple cyst on one of my ovaries that was not big enough to be a concern they have suggested my thyroid is likely the cause of my dreadful periods they recommended i see a endocrinologists however my gp has consistently refused a refusal and has been very pushy about bringing my levothyroxine medication down. Im at my wits end I feel awful and I really can’t advocate for myself against a gp that just won’t consider they’re not qualified to help me or intersted in this, in fact im told it’s my mental health when I’ve discussed pain so im really at a loss. I’ve been considering using med checks for a thorough thyroid check and im debating paying to see a private endocrinologist however I’m worried about the cost we’re on a very low income, it’s crucial I see someone who is up to date and can genuinely help me I can’t afford to see someone not very good. Im also wondering what that cost will look like?
Im unsure if what im experiencing is a sensitivity to Levothyroxine, or if these problems relate to needing t3 replacement also or really what? So just any guidance or feedback would be greatly appreciated x thank you for getting this far with my venting 😂
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Silvanred
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The first thing to do is get hold of your test results from your surgery. If your surgery offers online access to results then you will find what you need there if you are registered for online access. If not then ask the receptionist (not the doctor) for a print out of your results - going back as far as you can. On the print out will be the test name, result and reference rang. Post these on the forum for members to comment (the ranges are usually at the side of the result and we must have the ranges to be able to interpret your results as these vary from lab to lab).
Ideally we need to see
TSH
FT4
FT3
Thyroid antibodies
and because optimal nutrient levels are important we also need
Vit D
B12
Folate
Ferritin
I'm guessing these may not all have been done, in which case it would be prudent to do a full thyroid/vitamin panel with one of our recommended labs. The two most popular are:
Both tests include the full thyroid and vitamin panel. They are basically the same test with just a few small differences:
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12.
Total 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 Total B12 but a poor level of Active B12.
Blue Horizon include magnesium but this is an unreliable test so don't let this sway your decision, it also tests cortisol but that's a random cortisol test and to make any sense of it you'd need to do it fasting before 9am I believe.
Details of discounts available are here, just click on the lab's name:
Medichecks has random offers on thyroid related tests every Thursday so it might be worth checking to see if they have the test you want at a slightly lower price.
Both companies offer the test as a fingerprick test or a venous blood draw (costs extra). If you want to do the fingerprick test then I have some tips I can post if you like, some people find them easy, some find them more difficult.
With the fingerprick test, sometimes there's not enough blood in the tube to do all 10 tests so it's important to fill the tube to the line or just slightly above.
The Medichecks tube requires 0.6ml of blood, the Blue Horizon tube requires 0.8ml of blood (at least they did last time I used them).
Note that Medichecks normal Ts and Cs state that for fingerprick tests in the event of failure a second test it will be sent out free of charge. However, they make it clear that where the Advanced Thyroid Function Test is concerned this does not apply when the folate test fails:
The retest process above does not apply to the Advanced Thyroid Function Blood Test when the finger-prick sample collection method is used and the failure relates only to folate (i.e. all other markers in the test are reported normally). Please refer to the test product page for details on the refund process should this happen. By ordering a finger-prick kit for this test you agree that a refund will be your only remedy in the event that you do not receive a result for folate only.
I can't find the exact details but I believe the amount of the refund is about £8. The folate test is a pretty regular fail with Medichecks.
Yeah I have reached total loss of faith in my gp’s now. They have made a mistake and reduced my dose down to 225 over the last two months and then failed to get prescriptions filled without a battle as well so I’m just not even going to try anymore!
I was looking into Medi checks already but as I’m fumbling around a lot at the moment and struggling to really fully understand I wonder do you feel blue horizons test would be better? I do think I will likely go with the first as it can be full blood draw at hone which at the moment I feel would be best for me to really ensure I get a full and as accurate as possibly result. Im waiting until money lands in my account so it’s likely this could take me awhile now to get results back but fingers crossed it’s quicker!
My symptoms have always suggested that for whatever reason I just don’t on well either levo thyroxine I already know that I am constantly low with my vitamin d and b6 levels, and elevated white blood cell count and the last b12 check I had done was too high as I had not realised I needed to stop my supplement for two weeks pre blood test. I’ve also never had a test done first thing in the morning and before taking supplements or medication as I have never been given this advise by my gp’s. So for now I’ve stopped all my supplements and am forced to take just a 225 dose of Levothyroxine despite knowing it should have been 275 at least. can I ask should I avoid taking that dose before this blood test and is it important I fast as well? I’m anxious given our money situation that I do everything perfectly to ensure I get accurate results back x thank you for responding x
If you are having a venous blood draw then it doesn't really matter, go for the cheapest as the phlebotomist should take enough blood, what I wrote above was based on doing a fingerprick test.
This is the advice we always given when doing 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.
I like Medichecks as their online results platform seems sensible to me and you can track your results over time but probably they all do this now. Key thing is to get yourself tested. I buy the Medichecks but have the blood draw done at my local hospital so I know it’s going to work as doing it yourself is tricky.
You won’t know what’s going on til you have your t4 T3 and tsh. When you get results post them here with the ranges.
Do test first thing in am 24 hours after taking Levo.
There’s a lot to covet here! First, get a new GP… and referred to an endocrinologist who will prescribe your t3.
You need all your bloods done, T4, T3, TSH, and all your vitamins and minerals.
Don’t be put off by the cost of seeing a private endo - I hear it all the time ‘we can’t afford it’. But in reality, can you afford not too? I was undiagnosed for years and years, suffering global joint pain for five years which lead to me developing depression and anxiety, which forced me to give up my career. I see a private consultant who charges £75-£100 an appointment. That’s less than one weeks food shop to put it into perspective and I only see him a few times a year. IT IS WORTH EVERY PENNY!
I am on NDT (natural thyroid) which is a combo of T4 and T3. It has changed my life.
I am also on Celebrex for global pain from my GP which has also changed my life. I take vit D from GP too, as low vit D mimics symptoms of under active thyroid.
Cocodymol - it is ok for a short time period to help break cycles of chronic pain, but should not be taken longer term, as it is harmful, addictive, and you’ll need more and more as time goes on. Celebrex is a much better option, but you’ll need to fight for it. Don’t let them give you gabopentin or pregabolin - cheap nasty stuff. If they do tru that first, just tell them you can’t tolerate it, its make you sick and ask for Celebrex.
The brutal reality is that the NHS is not geared up to help thyroid patients and you have to be the one to take ownership of your health. Read and research. Come back to us and share your progress/results etc. Demand an endo referral as per the NICE guidance treatment path. Challenge and assert yourself with NHS staff. Know your stuff when you see them. And pay for private if needed. I use a combo of NHS and private which is completely affordable.
Lastly (sorry for the ramble) please don’t despair. We all understand and you will be supported here. come back to us 😘
Your lucky you have no issues with NTD and Celebrex. I was on both about 3 years ago and developed severe shaking what I did not realize is Celebrex reacts to NDT.
Don’t know why the two reacted since I took them hours apart but all I can say is I never had shaking on my NDT until I started Celebrex and once I stopped Celebrex my shaking went away … but I have since changed to t4/t3 combo.
Point of information. Do not ask for T4 and T3, or they might think you mean Total T4 and Total T3. Be sure to ask for FREE T4 and FREE T3. The total hormone is bound and unusable in that form. It doesn't much matter what those numbers are. It is the Free hormones that do the work the body needs done.
Hi I have some Celebrex that was issued for pain in my shoulders but told I should still take omeprazole , so have stopped taking because didn’t want to have problems with my thyroid meds not being absorbed- do you take it ? And do you take it everyday ?
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